Respond to this Survey

|

Export Results to a spreadsheet

	direct support professional
	36 (23%)
	administrative staff
	56 (36%)
	clinician
	23 (15%)
	service coordinator
	18 (12%)
	other
	23 (15%)
	Total: 156

	Clinical Administrator
	1 (4%)
	Transition Coordinator
	1 (4%)
	advocate
	1 (4%)
	Special Education Advocate and Intake coordinator
	1 (4%)
	Recreation Therapist
	1 (4%)
	Speech-Language Pathologist
	1 (4%)
	Researcher and State Early Intervention Coordinating Council member
	1 (4%)
	ILC Executive Director
	1 (4%)
	Advocate
	1 (4%)
	Medicaid service coordinator
	1 (4%)
	Educational Advocate
	1 (4%)
	I provide administrative, service coordination and clinical (social work) services
	1 (4%)
	supervisor of EI Service Coordinators
	1 (4%)
	Self Determination Broker
	1 (4%)
	Transition Services Teacher
	1 (4%)
	Family Reimbursement
	1 (4%)
	skill instructor
	1 (4%)
	In home services supervisor
	1 (4%)
	Family Support Coordinator
	1 (4%)
	Family
	1 (4%)
	Disability Program Navigator
	1 (4%)
	Provider
	1 (4%)
	Pastor
	1 (4%)
	Retarded sister lives with us
	1 (4%)
	provide technical assistance on transition to families, school districts and agencies
	1 (4%)
	Total: 25

	Development of Day Treatment Programs
	1 (1%)
	The ability to individualize services to meet a family need/desire rather than having to fit all families and individuals into an existing set of services/program types. The HCBS waiver has helped with this and OPTS as well Consolidated Supports and services have the potential. Having some freedom on the local level to creatively respond to requests.
	1 (1%)
	timeliness in accessing the services available. information is key, because parents and consumers do not know what they do not know.
	1 (1%)
	The only thing that has worked well is that there are places where families can go to get help having their child(ren) access OMRDD services. This has become another failure of OMRDD though because the wait lists are too long for family's to follow through.
	1 (1%)
	Medicaid Service Coordination - families appreciate our support, referrals, assistance during transitions, etc.
	1 (1%)
	access for medicaid patients to equipment/therapies
	1 (1%)
	Sexuality Education Programs, Medicaid provided individual and group therapy, In home and center based respite care, crisis intervention teams
	1 (1%)
	The whole concept of Person Centered Planning, and individualized services.
	1 (1%)
	Many of the programs available, particularly residential, have allowed many consumers to make great strides in integrating into the community and living more independently.
	1 (1%)
	reading instruction, visual supports, systematic routine, inclusion based on student strengths, daily communication with parents, data collection for planning purposes, consistency across settings
	1 (1%)
	From my experience the OMRDD Medicaid Waiver program appears to be working well to the extent that it can offer a variety of support services to persons with developmental disabilties and their families. In particular, respite, when available, service coordination and habilitation services have been successful in keeping families together.
	1 (1%)
	I feel we do a good job in identifying the supports each individual needs to be successful, providing activities and community/volunteer activities that our individuals want to participate in, and helping our individuals work towards/achieve their valued outcomes.
	1 (1%)
	Quality of services has steadily improved over the last 6 years. Services are more person centered than ever before.
	1 (1%)
	I work for an agency which is very supportive of an interdisciplinary team approach. This works very well.
	1 (1%)
	Home based or daycare based services are reaching more families than centerbased programs. As a result of their grass roots nature, they change entire families and daycares. These families and daycares come away with an understanding of development and learning skills that change the way they see and deal with young children in their lives. Siblings, cousins, aunts and babysitters learn new ways to think about childhood behaviors and childhood learning. It changes whole families. It breaks the cycle. We continue to need centerbased services for the severe and profoundly involved. Some groups are also needed for socialization and parent education. Overall however homebased services are more effective in the long term
	1 (1%)
	Monroe County EIP is well organized. As an Independent O.T. Provider, I find the service coordinators easy to work with and the needs of the children and families are priorities for the professionals I've encountered. The equipment loan closet is well organized and an asset to the community.
	1 (1%)
	I find that using person centered approaches and using the network of people and supports that surround someone to help that person plan and achieve their idea of what their life should be works the best in the service of that individual.
	1 (1%)
	Support groups for parents Respite
	1 (1%)
	I think that the help I give clients is most helpful with daily living skills.Having client be able to discuss with me issues that they have concerning every day life problems.Other than teaching them living skills, coping skills.
	1 (1%)
	Schools are more aware of VESID's role in providing support to students with developmental disabilities
	1 (1%)
	The services that are provided in-home residential habiliation, and behavior management, after-school, respite, recreational services are working well.
	1 (1%)
	There is need to provide appropriate funding which is not happening as far as I can say.
	1 (1%)
	Services provided through the OMRDD Waiver program are working very well. Our DDSO responds to emergency issues in a timely manner.
	1 (1%)
	Most families are able to receive high quality services birth to 5, but once the child is school age, the services dwindle markedly. It is especially challenging for parents to find psychologists and psychiatrists for their children who have expertise and who are accepting new patients.
	1 (1%)
	I beleive Early Intervention is working well because the families are exposed early to the available services, the children receive therapies to "make a difference" rather than always trying to repair damage already done and it helps the families formulate how to include the child within the family unit.
	1 (1%)
	Supportive school district and involved parents
	1 (1%)
	Direct services via ICMs. Respite services. Therapeutic foster care services etc.
	1 (1%)
	When families find out that there is a service available to them that they don't have to pay for and that will assist them in receiving some form of respite relief or assistance in purchasing items that will benefit their child and make there lives easier or less complicated.
	1 (1%)
	Our agency has found that children with special needs and their families need social and recreational oportunities. We continue to offer some of these services.
	1 (1%)
	Services provided in the home with as many family members as possible involved.
	1 (1%)
	The Early Intervention Program has been working well until recently, when financial pressures have led some municipalities, principally New York City, to implement unwarranted changes in procedures (e.g., eligibility determination, provider contracting) in an effort to reduce the rate of growth and cost of the program. New York State Department of Health, with the Early Intervention Coordinating Council, issued a comprehensive and informed document regarding Early Intervention evaluation and eligibility determination. This document should be binding on municipalities. This would prevent some of the procedures which are in place that may not be consistent with State DOH EI regulations and which are certainly contra-indicated clinically from being required by municipalities at the potential expense of infants/toddlers and their families
	1 (1%)
	Residential and day services are working very well.
	1 (1%)
	In our agency, one of our Community Health Nurses is one of the Early Intervention Care coordinators. This helps to strengthen the coordination between Early Intervention and Community Health Nursing.
	1 (1%)
	Using the internet tofind an array of services. WOrking with othe service coordinators from different agencies learning new strategies.
	1 (1%)
	The wide variety of opportunities offered to families and their children from transportation, respite, direct treatment, play groups, adaptive equipment, support services, medical interventions, etc.
	1 (1%)
	Providing services directly within the school districts has been very effective in meeting educationally-related needs of students and their families.
	1 (1%)
	Children are being identified with developmental disabilities at an earlier age. This allows for earlier intervention which may lead to an improved overall outcome for independence and academic success.
	1 (1%)
	individual therapy, family education
	1 (1%)
	This area now has many very experienced clinicians Rochester has a strong advocacy center to support children and their families in obtaining the services they need
	1 (1%)
	There is good communication between OTs and PTs in our department. There is also good follow thru with the parents. We have been able to provide regular therapy because of working in a day program/clinc setting. The wheelchair clinic is also working well and we have not come across huge problems obtaining powered or manual wheelchairs.
	1 (1%)
	The service coordination system can often be very helpful in linking together schools and community agencies.
	1 (1%)
	That they can get services especially children.
	1 (1%)
	Authorization of services IFSP meetings and interim meetings Service coordination is WONDERFUL
	1 (1%)
	The ability to use techniques from established but different treatment programs in treating school age children within the school setting is helpful. A service provider must have this flexibility and the educational system's respect for professional judgment must be maintained.
	1 (1%)
	Many of the tings in place are good - it just takes too long to acess them.
	1 (1%)
	Government benefits, small residential options, increase in choice of providers.
	1 (1%)
	I am an Occupational Therapist. I have been doing EI and 3-5 for about 12 years. What works for me is that after doing a good evaluation, treating a child, within 6 months to a year most children resolve their motor and sensory issues. If they are Autistic then they have a long road to walk as far as working with the various difficulties that these kids have. I think that the EI program is wonderful and that by the time a child reaches Kindergarten, most of them do not need services any more.
	1 (1%)
	What is working well is when those with developmental disabilities are included in the process of planning and implementation of goals.
	1 (1%)
	In providing services to children with disabilities, one of the services which works well is the Early Intervention Program. This seems to be an area where one can really make a difference, especially early on. It has worked well in the sense that first of all you are addressing developmental issues early, educating caregivers early in the child's stages of life and can have tremendous impact on developmental outcomes. However, over the past five or so years it has become more difficult to obtain these services for children.
	1 (1%)
	DDPC has funded a Nursing Facility Transition grant which has allowed grant recipients to assist people with all types of disabilities to transition from unwanted institutional placement. Initiatives such as this (and the Housing Registry) should continue so that people with all types of disabilities can live in the community.
	1 (1%)
	This is a very broad question. Over the years: educational advocacy and information dissemination services have increased, though all are over-worked, all are critically needed, and most work well. Respite and recreation services have increased, as have camps, summer programs and after-school programs for children birth to 21. The Early Intervention Program has provided access to preventive services for many more young children.
	1 (1%)
	Supported Employment Programs, Respite Programs, Individualized Day Services.
	1 (1%)
	Collaboration among families, service providers, service coordinators, school districts and counties proves to work well. When a team approached is used with the family and the child, success is guaranteed.
	1 (1%)
	The programs that my agency povides.
	1 (1%)
	Parent trainings, support groups & face-to-face consultations
	1 (1%)
	Service coordination with one care coordinator works well. This person serves as a central point for coordination of services provided to a consumer.
	1 (1%)
	Services that engage in capacity buiding Services that seek to meet individual needs and do not subscribe to a one size fits all mentality Programs that validate and utilize the expertise of people with disabilities and their families Models that utlize natural community supports
	1 (1%)
	Medicaid service coordination, Child Health plus, State Aid, Early Intervention Program, Committtie on preschool special education.
	1 (1%)
	day hab services and prevocational services in a workshop setting.
	1 (1%)
	opportunity to learn about systems that effect children and families; some work opportunities are there, more are needed; person centered planning is comming along, but still needs more support (especially when it comes to agencies to implement)
	1 (1%)
	The network/linkage of supports that are available via MSC to help families with children with disabilties
	1 (1%)
	If this question is specifically addressing our internal processes, I would say that what is working well is that our small agency can be more responsive to requests from families and individuals and respond more creatively to needs than some of the larger organizations can. We have had the pleasure of developing specific groups, accessing more creative community alternatives for support, and utilized our internal flexibility to hire staff that has a variety of experiences and networks that add value to the individuals and families we serve.
	1 (1%)
	Vocational services.
	1 (1%)
	Accessing DDSO for waiver funding, family reimbursement, changing services. In general, the Western NY DDSO has been very helpful.
	1 (1%)
	The ability of various agencies to network ( OCFS,NYCASA,OMRDD,OPVD etc) so that we're aware of the various supports available to the disabled population. Knowing who to call and what services their agency offers is key.
	1 (1%)
	MSC services are very important to the individuals as reported back to me from them. There is a great need for the service we provide; oversight with the ability to maintain objectivity from agency is a big plus. Having a person with a working knowledge of what is available and how to attain appropriate services-very important. The need for support of their needs and desires from MSC services is greatly depended upon--results are positive-requests are filled and all involved with the individual are well informed-creating a team of people who can help and assist is greatly needed and appreciated by all.
	1 (1%)
	overall system is well designed with a full continuum of services, adequate funding and MSC's as a safety net. The disabled in NYS have far more opportunites than their peers in other states.
	1 (1%)
	quality service, providers who care about the needs of the childrn they serve, improved communication among providers and other community agencies
	2 (1%)
	Not much! The system that appears to work best is Early Intervention, since it can be a mandated service with parameters in regard to time.
	1 (1%)
	What is working well is being more knowledgeable of any subject matter I may be addressing to a family. This is a direct result of the trainings I have received both in agency as well as outside the agency.
	1 (1%)
	Parents usually indicate positive responses on the Family satisfaction surveys we distribute. Evaluations are timely, represent the skill of the child, and parents are generally pleased with their service coordinator. and provider.
	1 (1%)
	Being aware of what needs are, communicating well, participating in a well developmented team process which is inclusive of consumer and family.
	1 (1%)
	The availability of community resources and supports in this area. We have wide range of supports to families who have children with developmental delays and disabilities. Many families are open to accessing these services and want to connect to agencies, organizations that can provide them with some support.
	1 (1%)
	Consumers and families are included in the decision making process, and services being developed are more in line with the needs and wants of the people we serve. OPTS proposals are providing supports that are not currently available.
	1 (1%)
	Advocacy groups are workign well and the support they get.
	1 (1%)
	Our chapters provide direct services to thousands of people a year and more via phone consultations.
	1 (1%)
	While some services and supports exist, key issues that are requiring attention in the field of DD include 1. IDEA reauthorization--Implications of reauthorization within NYS. Parents need information about what the regulations mean. 2. Increasing numbers of people are becoming destitute, there is a need for job training and employment supports. 3. There is need for legal adovacy. Programs such as legal aid are being cut back. 4. There is an ongoing need for safe and affordable housing.
	1 (1%)
	The SAANYS Project -- RE: Use of Service Brokers and CSS is definitely in the air, with reps. presenting to several parent groups in the NYC area over the past few months, I'm told. But very few people are actually availing themselves of this system for self-directed services locally.
	1 (1%)
	Sources of information for parents exist. However, schools continue to not inform parents adequately. For example, they don't tend to inform parents about the possibility of receiving support such as a 1:1 aide for extracurricular activities. The limited diploma options are also a problem.
	1 (1%)
	Generally, the medicaid waiver residential progams are successful because they tend to be more flexible in the level of supports available. Specialized clinic servcies (article 28) allow for excellent medical care by physcians and other practitioners who have trianing and interest in the field of developmental disabilties. OPTS projects hold much additional hope for continued flexibility.
	1 (1%)
	parent participation is working well and mainatining a full complement of staff
	1 (1%)
	Face-to-face visits
	1 (1%)
	It seems to work well once all approvals are in
	1 (1%)
	Frequent communication and education via website access or local training sites has improved the ability to learn current fiscal issues that ultimately affect changes in programs and services. Community education about disabilities has helped improve public acceptance of differences as well as more open to growth of programs.
	1 (1%)
	Outreach, referral, and supportive counseling services in order to address individual needs.
	1 (1%)
	Vocational opportunities, service coordinator
	1 (1%)
	I have dedicated my professional career of 20 years to supporting individuals with developmental disabilities and their families. During those years I have witnessed many positive changes in the service delivery system. Gone are the days we taught people to manage money utilizing plastic and paper money in Day Treatments, now our folks are learning in the community how many quarters it takes to get a soda out of a machine or a deli clerk. I think our attitude towards 'managing" challenging behaviors has shifted from power and control issues to being good listeners. I think the security and background checks, and mandatory fingerprinting of staff is a step in a positive direction in weeding out unsavory employees. Individuals have more choices for residential opportunitities. The community has overall grown with us as a field and is far more excepting of the population than ever before. When I was growing up developmentally disabled people were an unknown. Today children are far more familiar and understanding of people with developmental disabilities and hopefully will become understanding neighbors in the future.
	1 (1%)
	We have been able to provide services to many families needing assistance. The majority of our families utilize our agency for support in many areas and have used us as a resource to discover new opportunities. Many families have learned about advocating for their family members as well. They have also developed positive relationships with the direct care givers.
	1 (1%)
	We are providing support to many families in need. Without the support, they would have nowhere to turn.
	1 (1%)
	Our Family Support Services After Work Recreation Respite program is going very well. We have also done well with our evening recreation program.
	1 (1%)
	I don't think much o f anything is working well. Everything is ponderous and expensive, as are most things that are paid for with tax money. It is difficult to access services; programs are full, waiting lists are long, families cannot get the services they need when they need them. they get services when they are available, i.e. when enough of us service providers push sufficient amounts of paper for them, to get the help they need.
	1 (1%)
	All services communicating collaboratively together for our students and adults needs has been working very well.
	1 (1%)
	New residential development is very person centered, and responsive to individual needs.
	1 (1%)
	The Family Reimbursement Program has allowed our agency to interact with families on a monthly basis. In addition, Ubiquity has been able to network with other agencies to learn various processes for consumers to acquire needed services. The quarterly surveys (the few who respond), allow Ubiquity to understand the pros and cons of our systems we have in place. We are able to examine internal controls and make the necessary adjustments accordingly.
	1 (1%)
	i do not find anything working well.
	1 (1%)
	I think the one thing that I see as working well is the push towards meeting individuals needs so they are as independent as possible in the community. I supervise/staff a privately owned home where four ladies with MR live. They have flourished in this environment in a way they might not have in a traditional community residence.
	1 (1%)
	Providing families with information and choice about the available services establishes a better understanding and partnership. It is also helpful to longterm progress if families assist in choosing goals.
	1 (1%)
	*We are able to provide activities and services that are geared to our consumers interests and needs. *The ability to provide emotional and physical support to consumers. *Working as a team has helped to improve the quality of services. *The ability to provide an appropriate environment to meet the special needs for people with dementia *Staff retention. *Set schedules. *Training. *Six month meetings (or as needed) for each person helps to keep abreast of our individuals issues/needs.
	2 (1%)
	What is working well is the established community services. We are fortunate in our town to have Broom Developmental, Racker Center and Challenge Industries.
	1 (1%)
	Increases in the number of people receiving service. More personalized services available.
	2 (1%)
	There are programs to go to during the day for those who are unable to work. This addresses occupational performance, in the form of being a person in the world. Having a role (group member) often contributes to a sense of belonging, which is critical for emotional stability and good physical health.
	1 (1%)
	MSC seems to be helping to get the word out about availible services. In large, Family Support Programs really benefit the families they serve and help to make their lives a little less stressful. Most families are very greatful for the services they recieve.
	1 (1%)
	People receiving services are consistently improving their ability to self-advocate, understand their rights and assert their needs and wants. Staff providing services are doing what they can to increase their ability to handle situations from a person-centered rather than controlling apporach. The mobility of services has allowed many people to grow despite families moving or other life changes. OPTS seems to take that a step further and we hope it will expand opportunities even more.
	1 (1%)
	Alot of phone calls, mailings and patience!
	1 (1%)
	Working with the families
	1 (1%)
	Communication with other staff and getting informations to both parents and their children. Also asking for their input, so they can feel thaty they are involve
	1 (1%)
	Suport and assistance to families is best achieved when everyone is working together as a team. When this happens those with disabilities can more easily become independent. I am seeing this more and more with the increase of community integras on and availability of program
	1 (1%)
	Workign as a teim to come up with a plan that is in the best interest of the consumers.
	1 (1%)
	Dedicated staff working in this field
	1 (1%)
	Home suport is essential in our situation. The ARC has provided a great link between our home and the center.
	1 (1%)
	Prents education parents Kids helping kids.
	1 (1%)
	Consistency and clarity of requirements generally works well., specifically as pertains to OMRDD Eligibility, aging out funding, NYSCares eligibility, etc. I also find the staff who work at Finger Lakes DDSO to be helpful and more than willing to answer questions and offer consult on difficult cases.
	1 (1%)
	Respite programs and day/res habs. They've allowed trends, more person-centered options, and more community-based options than traditional services.
	1 (1%)
	What works well is being flexible with the amount of services that we provide. Meaning, we are able to offer Children's Respite services more often due to the program going from a Family Support Contract to a Waiver Service.
	1 (1%)
	I find that getting the individuals with disablities motivated to do things on their own helps thier self asteem and gives them courage to continue to learn. i also like to get individuals involved into activities in the community as much as possible. one way i do this is to give the consumer the power to plan and follow through with their goals.
	1 (1%)
	it seems that in teh last few years, familes seem more aware of programs and services available to them.
	1 (1%)
	-Family support services- particularly respite reimbursement. -OPTS application is becoming less onerous, and approvals are coming through more quickly. -Enhanced funding for health care for staff -Service Coordination
	1 (1%)
	Family Support Out of Home Respite (through recreational activities) Provider: The ability to provide regular and reliable respite is such a welcomed service to families. Predictable "off time" allows them the greatest degree of latitude to plan.....
	1 (1%)
	Wide variety of information available on internet for families related to future planning for their children.
	1 (1%)
	Individuals are being identified earlier, and mental health and health care needs are being addressed in a more comprehensive manner.
	1 (1%)
	Agency training, intake process, working within our very limited financial means and resources,
	1 (1%)
	In our agency's experience, our most successful areas of providing services, supports and assistance are in recreation, socialization, community participation, assistive technology and advocacy. We have strong internal and external networks in place that allow us to access funding or services relatively easy in the areas noted above. Some of the recent changes to MSC paperwork requirements (decreasing or elimiating some of the forms to be filled out) will allow for more direct contact with individuals and families, which has been a long standing concern of both families, individuals and MSC's.
	1 (1%)
	Availability of advocacy services Improved respect for these individuals' needs on the part of support agencies and their staffs
	1 (1%)
	Cooperation between most agency staff to try to obtain services.
	1 (1%)
	Service Coordination, including monthly face to face contacts Waiver Services Educational array of services for EI and preschool with collaboration between schools and not for profits.
	1 (1%)
	FLIC had a grant to determine what was need in rural Schuyler County for people with developmental disabilities. It was determined that the public needed to have more information about disabilities and how to interact with people with disabilities. In addition, the communities needed to become more accessible to people with disabilities and to provide accessible parking for people with disabilities. Getting people to understand the needs and how it will benefit the community was what was needed and worked well.
	1 (1%)
	People appreciate our program. We see progress in terms of integration into the community. Offering our rogram for so many years has helped us build our reputation & develop traditions.
	1 (1%)
	Areas that are working well with providing supports to consumers are supported employment and prevocational services. Another area that is working well for adults as well as children is recreational programs and social events.
	1 (1%)
	In working with consumers and their families the, Service Coordination program works to it potential when the families wish to have the service. In working with other providers, sometimes their time talbe is slow and this bring on dissatisfaction. I find that with assistance, the consumers can lead productive lives.
	1 (1%)
	Access to Article 16 & 28 for evaluations and health case, Pervasive Ideology Re: Choice and Independence; Special Law; Area of services being funded; improving communication between school system and adult service delivery.
	1 (1%)
	The various programs that are in place.
	1 (1%)
	There is a variety of services and programs available in the Orange County Area and a very efficient and knowledgeable central intake system (SNAP).
	1 (1%)
	What is working well is the fact that this service is available "in" The One Stop Center. The customers (children and adults) as well as staff benefit from having this service (resource, coordinator; facilitator available).
	1 (1%)
	System for service/funding approvals through the local DDSO. Availability of waiver service options.
	1 (1%)
	Communication between vendor agencies and me DDSO has improved.
	1 (1%)
	Treating them as you would treat everyone works well. Treating them as though they were different doesn't. Positive reinforcements work very well also.
	1 (1%)
	Programs that the parents helped develop seem to work well. Also MSC, reshab and dayhab without walls work well if the consumer and the family have actively participated in the development of goals and want to work on them.
	1 (1%)
	1. Personal Outcome Measures is practiced agency-wide. 2. Educating staff to more effectively work with consumers, families, local human service agencies, and school systems. 3. The ability to provide clinical services through Article 28. 4. The ability to give services that people would not normally get. 5. Helping individuals with disabilities progress toward attainment of personal goals. 6. Working closely with consumer employees, caregivers, and families. 7. Person-centered planning. 8. Supportive and interested administrators.
	1 (1%)
	Person centered services, developing individualsupports. One to one contact with individuals and/or families. Number of individuals who are competitively employed.
	1 (1%)
	Being able to spend quality time w/ individuals to assess needs
	1 (1%)
	The network of services is vast and difficult for the average person to negotiate. The Service Coordination role is extremely helpful to families working to obtain sevices needed by their family member.
	1 (1%)
	There are those individuals who are very interested and involved in their services and want to improve their lives.
	1 (1%)
	The placement of adults with disabilities in the community both in residiential settings and in workplace settings such as Home Depot has proven to be both beneneficial to the consumers but also to the community in general. Workshops have often been overlooked in this respect but they also provide an excellent resource for adults who need extra support but also find a sense of pride by earning their own money.
	1 (1%)
	The continuity is most effective. I help clients with relationship issues with others in their lives, and the relationship between us has served as a model of trust and understand for them to use with others.
	1 (1%)
	Having patience with our, "normal folks" to learn acceptance. We are handicapped accessible and that goes a long way with our CP kids. They are not segregated by physical barriers anymore. I have a 'speech challenged' CP parishioner about 8 years old. My pupetts really work because they're non threatening. It works every time with this little guy. He's still not speaking yet, but the hugs and smiles are non-stop.
	1 (1%)
	Interaction with Abbey Industries
	1 (1%)
	Pre-Planning prior to exiting school. when a family is working with OMRDD prior to transitioning to adult life.
	1 (1%)
	Most staff that are working in this field are kind-hearted people that really want what is best for the individuals.
	1 (1%)
	- Interactive and smaller groups - Individualized services (i.e. counseling/training/support) when needs arise - Having long-term, good staff work with the individuals because they get to know the individuals/ develop the relationships and can provide better quality and stability for the individuals - Having the senior companions assist with some of the needs of the individuals
	1 (1%)
	I have worked in this field for almost 9 years and have seen some improvements in systems in terms of ensuring quality services are being provided. There has definitely been a stronger emphasis on consistency and follow-through to ensure that what needs to get done is getting done. In my specific domain, there have been improvements in earlier detection of dementia symptoms to be able to meet the specialized needs of these individuals. There have been some more opportunities for training as well to be able to be the most informed in the areas in which we work. There has also been a positive collaboration with another agency in providing services for aging and dementia.
	1 (1%)
	There are a great deal of choices when it comes to adaptive equipment to help those with developmental disabilities excell.
	2 (1%)
	test
	1 (1%)
	Total: 156

	Froxen Medicaid reimbursement rates for Article 28 clinics and EI providers have restricted service development and created witinf lists for services
	1 (1%)
	Bureaucracy -- The myriad of hoops providers have to jump through before getting approval is mind boggling at times. The changes in the message from Albany to the DDSO to the County level within OMRDD and SED and DSS is truly like playing telephone -- you can hardly recognize the orginal intent.
	1 (1%)
	parents of adults with disabilities who expect support that is not realistic of a service coordinator. This is key mainly for adults who live in the community on their own with or without supports. The timeliness in being able to reveive the services. A lot of the programs have no clear guidelines and/or instruction. Lack of training.
	1 (1%)
	Many times the parents of children that are dev. disabled are limited themselves. The need to have a Provider to walk them through the maze and try to decide what service to access and wait through the waiting lists makes them give up. I am a time limited service Provider (6 mo.) and most times, people have not even been "intaked" yet so they don't get help accessing services and often give up.
	1 (1%)
	Attaining approval/funding for Respite and Res Hab hours as well as obtaining staff to fill the hours.
	1 (1%)
	HMOs, eligibility for assistance programs (care at home--wonderful but some loop holes for access)
	1 (1%)
	Wait-lists for group homes, wait lists for service coordination, wait lists for residential habilitiation. No in-patient psychiatric hospitalization spots for persons with developmental disabilities.
	1 (1%)
	It is diificult to assist families and individuals to make informed choices and decisions. Individuals with cognitive disabilities often had not had a lot of experience making choices and are not sure of themselves. Service Coordinators have limited quality required training. Families have limited accurate information when their children are going through the transition process, additionally schools are not preparing the young adults for the Adult service world. OMRDD Eligiblity. The eligiblity critria has let to situations where people have been receiving services for many years, originally deemed eligible by the previous criteria. When they requested new or increased services and review was done on their eligiblity and they were found no longer eligible and were told they could not only not get the services they requested, but they could no longer get what they were previously getting. At that point they were "dropped" completely, with no viable service for them to be referred to.
	1 (1%)
	Residential services for children with dual diagnosis (intellectual disability and mental illness) is sparse. Therefore, moving children on (into the community) who have progressed following extensive psychiatric hospitalizations, institutionalization, and/or time in jail is nearly impossible. Their success goes unrewarded and unacknowledged.
	1 (1%)
	need for support staff training, need for additional staff for data collection, need for additional staff to provide information to families regarding community based supports, need for acceptance by general education staff members to more openly include students, looking for on-going research in the field of autism to participate during the summer months to no avail
	1 (1%)
	The challenge appears to be in personnel. The constant turnover of service coordinators and direct care staff presents a serious barrrier to quality service. The community care model is so diverse that it demands a very large cadre of well trained and motivated staff.
	1 (1%)
	Challenges we have experienced include: 1. Finding community/volunteer sites that are willing to work with our individuals that have greater needs. 2. Assisting individuals work towards their dreams while having to work within "Medicaid billabe services." 3. Turn over in staff has been problematic from time to time=we get staff trained and excited about a particular service for the individuals and then they leave, usually due to not making enough money and we then have to start over. It at times creates for non-continuity of opportunities for the individuals.
	1 (1%)
	Ability to recruit and keep direct care employees at current wage levels. The state's ability to pay higher salaries makes for many staff departures upon completing their training and getting some experience in the field under their belts. Waitlists for day and residential services are at an all time high for our agency. So many families are discouraged to find out it may take years before placing their individual into our service system especially residential.
	1 (1%)
	I work with high-functioning adults who have autistic spectrum disorders and many of them have difficulty qualifying for OMRDD services due to their aobe-70 IQ's. This limits the types of referrals I can make for them. Also, there are very few programs (e.g., employment support, residential) equipped to serve this population, even when they do qualify.
	1 (1%)
	Inner city families often have limited ability to engage in regular services. Parents are at times limited by their own cognitive issues, substance abuses issues, mental health issues, housing issues, and overall poverty. Time is an issue for all families but is particularly a concern for upper middle class families. I find myself doing more and more evening visits in both the inner city and in the suburbs.
	1 (1%)
	Shrinking funds for equipment needs for children beyond Early intervention is a problem. Families are often unable to obtain a bath chair or wheelchair or specialized stroller or car seat they need, even with a DDSO service coordinator trying to find funding.
	1 (1%)
	It appears that the state and government funding of programs and available services do not match the needs of people wishing to use individualized planning for their own futures. For example, if someone wants to live in a small inclusive apartment with one or two friends, the supports are not easily accessible, not to mention the time it will take to put the available supports in place for that person to actually make the move.
	1 (1%)
	Coordination of services for children who overlap the OMH and developmental disabilities systems. Also coordinating services for their parents and siblings. There are any number of issues that have proven problematic for families where one member of the family has a service coordinator from a different system - who does not provide direct service while another service does not have funding to provide for ancillary services that the other service coordination program can provide.
	1 (1%)
	Confilcts of iterest with service cordinaters,who are not directly dealing with them on a daily basis like I do.The threats of injurys,going to challanging neiborhoods,Not being able to acess all community services,I work very hard to help clients deal with issues,only to have some service corrdinater tell me how to handle them in a differnet manner.
	1 (1%)
	Parents are still fairly uninformed about services, eligibility requirements and local resources. They have trouble navigating multiple systems. School staff still need more training regarding the transition to these services. Students need to improve their ability to self advocate. Students have minimal peer/community connections. TRANSPORTATION!!!
	1 (1%)
	I am having difficulty accessing Medicaid for children who reside with Middle and above income parents who cannot get specialized services. Residential placement for Higher functioning and Autistic adults is frequently being denied and difficult to access as well as residential placement for the dually diagnosed. There are waiting lists for many of the family support services. Parents have reported to me they are dissatisfied with the Medicaid Service Coordinators they received because they are not aware of the services that are available in the community. There are long waiting lists for mental health services for those individuals who need individual counseling.
	1 (1%)
	Lack of support services due to available funding.
	1 (1%)
	There are challenges in serving children with a dual diagnosis. Finding appropriate residential care is a major issue.
	1 (1%)
	Children with multiple needs that do not carry an autism diagnosis do not recieve sufficient individual 1:1 services that would enable them to make the type of progress of which many of them are capable. CHildren should be able to be evaluated by a developmental pediatrician within 1 month of suspected delay or serious condition (e.g. autism). Children should not have to wait for the confirmation of a diagnosis for 6-9 months, while they are receiving insufficient services to address their needs.
	1 (1%)
	I beleive my most frustrating challenge is the paperwork and all the rings you have to jump through to continually justify and fight for your service.
	1 (1%)
	Challenges have been in working with the mainstream teachers in the school
	1 (1%)
	From the point of view of Prevention which is an OCFS/ACS group of programs mandated to work with families at risk of removal, we find that there are more extensive and more developed programs for children with physical and/or developmental disabilities, than for families where either parents or children suffer from mental/emotional issues. However, in many families where there are either/both developmental or physical problems, there is usually attendant mental/emotional distress, particularly for the parent and caretakers. The services to address the Family Therapy needs of such families are sorely lacking. Services for individuals can be gotten, tho' insufficient for mental health needs. But these difficulties impact all family members severely yet there is no state support for Family Therapy structured therapy, for example: reporting mechanisms require a DIAGNOSIS as part of the reimbursement process, whereas in Family Therapy diagnosing is done as hypothesis, and problems are understood to be between family members rather than embedded in one member and individual/group therapy assumes
	1 (1%)
	We are very linmited in our county with services for our families. We have to go outside the area to receive assistance. If our children are in crises they general placed outside the area sometimes out of the state to receive the needed service. We have had referral for families that do not meet out elligiblity requirements for OMRDD or have a dual diagnosis. Families with mental health issues can not be served by our agency. We try to send them to the appropriate place to receive assistance.. That is through the CCSI and the FADD/SED support group in Oswego. This isn't something that effects our agency but our county will only receive 9 beds in the 10 year span. We have a large wait list for families needs adult placement in the next few years with no places for them to go. OCO has been very creative in making some additional options available to our families, but they are not enough.
	1 (1%)
	Definitely funding sources and transportation limits.
	1 (1%)
	Getting referral sources to understand that the home is the best place for services to be provided most of the time.
	1 (1%)
	There has been a move in New York City towards over-regulation of the Early Intervention evaluation-eligibiltiy determination process.
	1 (1%)
	People who do not have proof of age of onset despite an appropriate diagnosis have ended up in jail, homeless and trapped on inpatient psychiatric units where they did not belong. The OMRDD eligibility criteria works well for people with families in the community, but for people from out of the area or whose family support has collapsed, the situation can be very difficult.
	1 (1%)
	We suspect that there may be more individuals and/or families who would benefit from Community Health Nursing services.
	1 (1%)
	Clients living in the community are not obligated. They do not meet appointments regularly, and it often difficult to oversee they complete all required task, because their are too many people on caseloads, that need separete individualized services.
	1 (1%)
	Not being able to do what is best for the child and the family, e.g. co-treat with another therapist as needed or determined by via professional judgment and credentials. These rules are created by non-therapist managers. Need to team with other service providers, but can only overlap 10 to 15 minutes. Therefore, "teaming" is done during off time and in the evenings and weekends, which excludes the family (who is part of the team). Rules that limit the number of sessions a child/family can have in a day despite family's request. This creates scheduling issues. When you live and treat in a rural area, plus add the price of rising gas prices for traveling, it creates challenges for providers and families. Being called Early Interventionists...sometimes other professionals make determinations about a child without consultation of the team member with specific credetials or based upon limited knowledge/2 day introductory course and have arrested or impeded the child's development. The term does not recognize each of our specialities, and parents often get confused because they are given conflicting information. Lack of support/intervention from Ongoing Service Coordinator when issues or concerns are brought to their attention e.g. numerous cancellations without reason, no shows, etc.
	1 (1%)
	Difficulties in obtaining funding for expensive, but necessary, equipment (such as power wheelchairs, augmentative communication devices, and home modifications) have significantly limited opportunities for greater independence.
	1 (1%)
	At times the challenge may be the family situation and consistant access to the child to provide approved services. Dealing with Medicaid for needed equipment can be frustrating when you resubmitting and ask to continually provide additional justification when all the required as well as additional informaiton along with documentation was submitted at the application.
	1 (1%)
	limited time and sessions to improve function and independence level
	1 (1%)
	Lack of funding for team meetings to coordinate services the child receives Diificulty receiving funding for equipment Poor coordination among the agencies that provide services for a child with complex needs
	1 (1%)
	1.We do not have the financial strength to buy equipment that we need to run a high standard department i.e. ceiling tracks to transer larger individuals easier,etc. 2.We have poor follow thru with the some staff in the group homes in carrying out certain protocols. 3.There are some splints and other DMEs that are not covered by Medicaid that these consumers would need. 4.We have some individuals who attend nursing homes and come to our day program and cannot attend our wheel chair clinic due to funding issues. Individuals can only get chairs when some one dies in their facility. This is a hame.
	1 (1%)
	We often have significant difficulty obtaining necessary adaptive equipment through medicaid and other payment sources.
	1 (1%)
	Getting appropriate equipment especially wheelchairs, getting them fixed can be laborious or nearly impossible especially for families with other demands in their lives who don't have the time and energy to be persistent with the system.
	1 (1%)
	Setting up appointments and families failing to be there. It would be nice to know whether the state has a guideline regarding number of no-shows/missed visits prior to case discharge.
	1 (1%)
	The limited and dwindling supply of time, space and equipment in school sytems is a constant challenge. Of particular concern is the impact of mental health issues in the lives of both parents and children. Social service supports appear severely limited and undervalued in many school systems.
	1 (1%)
	There is not enough available to our consumers. They have to wait too long for services or the services don't exist at all. One of the biggest hurdles is transportation. Another one is employment or meaningful day-hab.
	1 (1%)
	Laclk of qualified workers.
	1 (1%)
	The challenges have been cut backs from the state and worrying that the programs will end or become so sparce that they will not help the children. I work with children who have severe sensory processing disorders, Autism, and behaivoral difficuties. I am concerned when we become limited to the consult visit because of limited funding when the sensory issues cause so many other difficulties.
	1 (1%)
	Some of the most difficult issues we are dealing with revolve around youth with developmental disabilities. Parents are nervous about giving up 'control' of their child by empowering them to make their own decisions. Further, we find all too often that students do not get adequate input into their educational goals. Much planning is occuring in the absence of the individual with disability.
	1 (1%)
	Some of the challenges include: certain services not being approved; or clumping services together (i.e., occupational and physical therapy), these are clearly two different specialties and require different attention to focus on simultanous yet different aspects of development. This makes the clinicians job extremely difficult because you try to focus on so many different areas and are not able to devote any significant time to one area during a treatment session. In addition, obtaining equipment/assistive devices is a nightmare. You need to jump through so many hoops to obtain a piece of equipment that sometimes it seems just not worth the aggrivation. Also, documentation has been a huge obstacle. Every 1/2 of year or so it seems as though the documentation grows more and more. All the documentation take away from the focused care that could be provided instead.
	1 (1%)
	A major challenge is obtaining affordable and accessible housing. In addition, obtaining Medicaid state plan services, such as home health or personal care, continues to remain an issue. Some counties and Certified Home Health Agencies are unwilling to approve and/or provide adequate services. This puts individuals with developmental disabilities at risk of unwanted institutional placement.
	1 (1%)
	The state of transition from school to adult services: the need for greater thought and planning at the school level, and for relevant curriculum; job coaching and job development; awareness and implementation of independent living options. Public sector support--money-- for information serices and advocacy services. Difficulties at times of systemic change--IDEA reauthorization , school system reorganization, changing city, state and federal administrations etc.--in informing parents, families and consumers of changes; and working in an inconsistent environment with changing priorities. Practical aspects (such as cost, staffing) of keeping up with changes and the need for information. The challenge of outreach in an enormous metropolitan, diverse urban area.
	1 (1%)
	Timely completion of Guardianship, Understanding Health Care Proxy's, Waiting lists for many programs like residential, inclusionary recreation, and counseling.
	1 (1%)
	Budget cuts!! Counties and school districts need to stop cutting corners to save money. Families and children are the ones who suffer while they are who need the most support and service from us. Moreover, due to the numbers of those in need of services and the number of us who can provide the service appropriately, the caseload is rather large and long hours are put in every day. This is also due to the fact that there are not enough professionals adequately trained or certified to work with such individuals and their families. Also, the reimbursement rate for service providers is extremely inadequate to provide the level of service needed to most families and individuals. Even evaluations cannot be appropriately completed because of the low rate. In turn this causes more stress for families already dealing with so much.
	1 (1%)
	I have to many people to serve
	1 (1%)
	lack of appropriate funding to increase the services we provide to meet the needs of the families
	1 (1%)
	Establishing eligibility for services. ELigibility requirements are stringent, and there are few if any resources in the community to help establish eligibility. There is a lack of psychologists to provide IQ tests, lack of an outreach resource to assists the consumer identify the criteria and components to determine eligibility.
	1 (1%)
	OMRDD eligibility Transition services are inadequate OMRDD system is bureaucratic High turnover rate with service coordinators One-size fits all mentality of many service providers
	1 (1%)
	Medicaid Transportaion, Clients abuse it. It's also never on time how is a family with a disable child suppose to sit around for 5 hrs to return home after a doctor appt. or be embaressed because the yet again missed or showed up 3 hrs late for an appt, because the transportaion ran late. Why can these companies have a taxie available for a cash paying customer but not a medicaid paying one?!
	1 (1%)
	Respite services could be doubled for the families. Transportation to Supportive Employment jobs is always a concern. Residential placement is needed for some individuals.
	1 (1%)
	some agencies have not or are not keeping up with the desire of families and individuals to do person centered or unique approaches to employment and or living options. Limited work experiences/opportunities for folks. still a prevelence of staff people thinking they know what is best/appropriate for individuals.
	1 (1%)
	The challenges that I have experienced are telling families that there are long waiting lists for services (respite). Also, trying to arrange transportation for children with disabilities who require after-school care out of their respective school district. School districts are not acquired to provide transportation out of their boundaries, and this blocks access for families with children with disabilities who require a specialized after school respite program.
	1 (1%)
	Again, as we are a smaller agency (local office) we are challenged by time and resources. It often takes a great deal of time to complete eligibility determination for Medicaid billable services. This time often is unreimbursed, intensive in its demands on staff and resources, and can interfere with expeditious handling of eligibility documentation. We currently have no dedicated staff to focus on this particular task, and utilize the professional staff (myself and two MSCs) to complete eligibility and enrollment. Also, as we have a very specific name, this is often misunderstood in the provider/recipient community and has served to at times limit our referral sources. Some provider agencies and families mistakenly believe that we can only serve those individuals labeled with the condition found in our name! More aggressive marketing of our available services has helped.
	1 (1%)
	Insufficient outpatient, family support, habilitation supports waiver, children's waiver, community supported living services, in-home resite, out-of-home respite, day treatment, residential treatment, and behavioral trainer services.
	1 (1%)
	I have been working for almost a year on obtaining funds for programmable hearing aids for a child, to no avail. I cannot even obtain an official medicaid denial in order to access alternate funding.
	1 (1%)
	The major challenge is making an informed decision as to what agency offers the appropriate services so as to not confuse our clients.
	1 (1%)
	Getting funding secured to make things happen for people being served. More attention paid to cost than the need and desire of the person. Lack of experience/education of staff working with people-creates issues/concerns for the person in need--Very often times it is in the area of mental health concerns. Community based people: Adversion to sharing information, following up with referrals made, parents continue to need a great deal of exposure/education to what is available and how to utilize the systems in place for their loved one to succeed.
	1 (1%)
	lack of capacity in the system - residential waiting list, lack of CSP dollars for day service slots. qulaity of direct care staff remains a challenge
	1 (1%)
	communication problems, transportation difficulites, lack of available professionals due to remote area
	2 (1%)
	The system which does not truly foster person centeredness. The system focuses heavily on an abundance of paperwork that takes away from the actual practice of providing quality consumer driven services. We also have ongoing and emerging needs such as psychiatric services, aging services, parents with special needs and other underserved or unserved areas. The turn around for eligibility can take up to 3 months on average; way too long for a family in need of help. We also need to greatly expand autism services.
	1 (1%)
	Many times parents are resistant to some of the services their children may be able to receive, and work in direct conflict with myself as a service coordinator, and their child does not receive all the services that he or she is entitled.
	1 (1%)
	Parents who have numerous social priorities or have a challenge like substance abuse, mental illness, or developmental disabilities themselves are difficult to engage in having their child's development as a priority. The payment structure is difficult for direct providers who are servicing these families, who may not be home at the time of the appointment.
	1 (1%)
	Meeting the needs and desires of the consumers as well as getting the community providers to participate as a team member, rather than independent, in the care of the consumer.
	1 (1%)
	The time frames within which some local organizations run can be difficult for some parents/family members. These extended time lines in order to access some supports can be very long. By the time the funding is approved for a certain expense, for example, the parent has lost out on the opportunity to access a particular service or particular item for their child.
	1 (1%)
	Transportation continues to be an issue. In addition, the timeliness in receiving approval for services. In many cases, approval for budgets needs to go through the outlyer process, and time involved with that process delays services. For individuals who have significant physical needs, the cost of providing the supports typically falls outside current caps
	1 (1%)
	Lack of funding for new programs. Lack of funding for training and techniques for new staff.
	1 (1%)
	As you are probably already aware, we are seeing (and have for some time) a huge demand for educational advocacy services. As 50% of students receiving special education services have learning disabilities, there is a big demand among this population. One of our struggles to continue and expand our ability to offer educational advocacy services is funding. Unless you are a parent training and information center or administer a P & A program, like many of the independent living centers do, there is not a funding source for this service. We used to provide this service through OMRDD Family Support Services funding but OMRDD requires eligibility documentation on every consumer that receives services from them now. It is very difficult to acquire all the documentation and approve their eligibility in a timely manner and that process just does not make sense for this service that needs to be delivered immediately. Over the past several years, OMRDD has really tightened their eligibility criteria and many people have lost services or those that may have been eligible in the past would not be eligible today. This has been a real blow to individuals with learning disabilities because other than VESID Voc. Rehab. services, there is essentially no other service system for people with learning disabilities.
	1 (1%)
	1. I think the biggest concerns are around Medicaid--With all the bad press it gets in regards to tax hikes- there is a lot of pressure to cut back and eliminate services. 2. There is concern over the potential erosion of the ADA, particularly with new appointments to the Supreme Court. The ADA had had some success but could easily be weakened. 3. Education is also an ongoing concern particularly with the reauthorization of IDEA. This is a big one for many parents. My guess is most parents don't have any idea yet what is it going to mean. 4. Increasing numbers of individuals being / becoming destitute- with out food, shelter, so on. There is a real need for jobs, and training and supports to get people employed and successfully remain employed at jobs that can at least provide for shelter, food, and hopefully they can access Medicaid. 5. Accessible/affordable/safe housing needs are also somewhere on the list, as there continues to be a shortage in that area. 6. There are very limited options for access to advocates and especially legal representation. Legal aid ahs also been cut back so much and has so many limitations that people who previously would have qualified for their help and possibly gotten it, can no longer do so and there are virtually no other alternative for them for legal help.
	1 (1%)
	I suppose it's not a surprise to hear that the old and seemingly never-ending issue of accessible transportation is still key, here in NYC. In fact the NYC MS Society is rolling out initiatives for wheelchair accessible vehicles to replace taxis and a local law that would have enabled access to ferry services for people with disabilities.
	1 (1%)
	A large percentage of special education advocacy cases, even ones that are resolved before litigation, involve placement issues. Our office also sees a lot of issues related to discipline, though they are primarily children with disabilities other than developmental disabiltities, (mental health, etc). Schools are declassifying students who still need services. Inclusion and the Schoo'ls ability to include kids is still lacking, ecpecially when they get to the middle school/high school level. The Alternative assessments for students with disabiltiies are inadequate. It has become increasingly difficult to get testing modifications. State tests are a huge source of anxiety for schools. A new trend emerging is parents trying to get services from private schools. Placement of children in private and parochial schools will continue to be an issue because of the change in (federal regulations) shifting responsibility to the district where the school is.
	1 (1%)
	Lack of consistent competant staff remains a major problemmatic issue. The available workforce has diminished and work ethics of new employees often do not meet regulatory expectations. Lack of flexibility in supported employment funding does not allow opportunities for indiviuals with severe disabilites to be sustained in employment if they require long term supports.
	1 (1%)
	community resistance to having children with autism in neighborhood
	1 (1%)
	Paperwork redundency. I'm basically a copy machine. Copies to FL DDSO, copies of the same stuff all over the agency for any change in consumer plans, additions of new services, deletions of old services, or changes to services. Copies, copies, copies. Everywhere, to everyone, all the time. It's not cost effective nor time effective, and it's frustrating to everyone involved.
	1 (1%)
	Getting approvals
	1 (1%)
	It seems the biggest challenge is the transition from one service provider to the next for a child with a disability and their family. It can get very confusing on 'who provides what service' and a variety of human service and educational agencies can overlap in service delivery.
	1 (1%)
	Lack of public transportation, limited funding for traumatic brain injured individuals, adolescent facilities which provide temporary (16-20 months) intensive rehabilitation services for T.B.I., educational institutions (i.e. schools) understanding and addressing these needs (for T.B.I.)
	1 (1%)
	Limited resources, day program and employment opportunities.
	1 (1%)
	Staffing. Staffing. Staffing. The East End of Long Island is a very expensive place to live, and finding competent staff that are willing to work the hours and wages we can provide is the biggest challenge, period! Expenses related to gas, healthcare, education, and living expenses create hiring and retension issues that need to be addressed. Housing opportunities for staff are often more challenging than for the individuals we support. Families of school aged children and the school districts that serve them have a very limited understanding of the adult service provision community, despite many attempts at outreach. Families of children with developmental disabilities are not considered a priority at the LIDDSO and it is often frustrating to not be able to provide them the supports they require. State Education and OMRDD would benefit from piloting projects in this area. Children with developmental disabilities often do not have the stimulation and socialization opportunities they desperately need at the end of the school day, weekends and summer vacations. Many families have to work to support their families and would benefit from the professional care Respite programs can provide.
	1 (1%)
	We have a high demand for services but limited resources with which to assist the families. Many families would love to be able to receive a larger amount of services or attend our programs more days than we can accomodate them. Finding and maintaining high quality staff is also an ongoing issue.
	1 (1%)
	Staff turnover is a major issue. It is hard for people that are so regimented to have a change in their routine. The quality of staff has been an issue, also. Some staff are not of a caliber that I would like to see working with my family member.
	1 (1%)
	We have had challenges with regards to getting some families involved as they are reluctant to change their schedule, from the norm or have problems with letting their family member go out on events.
	1 (1%)
	See above. I have several families that needed services yesterday that are on waiting lists. People have no idea of the lead time involved to get anything from the State of NY
	1 (1%)
	Lag in paperwork to support our consumers.
	1 (1%)
	1) Insufficient funding for staff salaries! 2) Inadequate clinical supports in new programs for consumers. 3) Inflexibility of HCBS funding (since it's individualized) to be able to respond quickly to crisis or emergancy needs. 4) Failure of rate setters/funding sources to recognize some skyrocketing costs in giving rates and trends (general insurance, workers comp, health insurance, fuel costs all have double digit increases).
	1 (1%)
	The biggest challenge for our agency is the inability to receive our funds on a consistent basis. The flow of our funds create obstacles for us and our applicants. The lack of funds hinder our efforts to honor requests from families that need support and services ASAP.
	1 (1%)
	there is no support for the disabled.
	1 (1%)
	Sometimes families want residential habilitators to do more than they can, they don't realize the restrictions--ie not passing meds, etc.
	1 (1%)
	1. Families using family support services are encouraged to find their own providers. Sometimes families dont have enough or any natural supports or community connections to find a provider. 2. Living in a small rural area makes it challenging for perople with disabilities to access transportation, housing, jobs, and community involvement.
	1 (1%)
	*Better communication needed with other providers of service. *More extensive training needs to be provided to staff who are providing services to Alzheimer's/DD individuals. *Getting enough clinical support. *Difficult to provide quality services all day to a population that is aging, has many medical issues and are tired from long bus rides to/from the program site. *Service Coordinators who know the individual(s) they are serving. *Continual changes in paperwork requirements that dominate a day and ultimately infringe on the quality of services delivered.
	2 (1%)
	It is always difficult to get the information needed to the families. There are so many agencies providing services, but no direct communication among the agencies and most importantly to the families of need. I often hear from parents " if i had only known about this service earlier."
	1 (1%)
	Need for End of Life information and planning for families. Resources to train staff for residential setting. Community hospital staff are insensitive to special needs and often uncooperative when written informed consent requires surrogate procedures. Shortage of C-Sep funds to support more specialized services.
	2 (1%)
	1. Equipment needs of individuals: maintaining aging equipment (wheelchairs, etc) and denials of adequate equipment by Medicaid is a constant struggle. Much valuable provider time is spent justifying to Medicaid, and second and third requests from them for additional information that seems irrelevant or that was already addressed in the original justification are very time consuming. 2. Therapists are stretched very thin by my agency, even though 'therapy' is mandated in my day program by the DDSO, there are no guidelines for frequency of service. There are no standardized evaluations for consumers as are used in school-based treatment under Federal Education Law. Therefore, there are no criteria set as to who receives services. It is completely up to the individual therapist to evaluate and recommend services or no services. Who is inspired to recommend services when a caseload includes up to 250 people? Therapy in the day programs has become more oversight and consult than it is direct treatment. My job mostly involves making recommendations for managing daily needs at the day program. 3. Recommendations made as a result of my consultative role are often not followed by staff, and the administrators and managers are also so stretched that these recommendations are often neglected and not enforced by management. 4. Staff turnover is high, and new staff must be trained constantly. This phenomenon reduces the ability to proceed with any more than basic care. Also, young and inexperiened staff often are not aware of health conditions and situations that are serious or urgent, and may not act adequately to address a health need. 5. General health and wellness issues (exercise, good nutrition) are often ignored, due to lack of staff education or valuing of these issues, or to a culture of tolerance of poor health habits. I constantly see physical decline that could have been avoided related to poor overall health habits.
	1 (1%)
	No trend in FSS funds. Establishing eligibility for school-age children that need an ABS. The local school districts are not very willing to assist with obtaining an ABS. If they do one, many times it is not done in an acceptable format for the DDSO. I have shared a list of acceptable testing instraments with them on several occations. It takes several months, sometimes a year, in alot of cases to get eligibility assablished before families can get the services they need. There is only one local Article 16 Clininc that can do an ABS on a child. They have one partime psychologist that can assess childten, with a long waiting list. Also, it is located in the next county.
	1 (1%)
	MSC is a valuable service which is often not understood by providers of other services. Sometimes providers who work under stricter certification types of guidelines, have difficulty with the concept of informed choice and natural consequences even though the consequenses do not present health or safety issues. Low cost housing is always a problem. It would make it easier to utilize the residential housing system as a progressive learning experience toward independent living if the housing were available on the other end. E-Mods take forever! Transportation is an expensive problem not easily remedied. Children are not introduced to the available supports early enough. Schools are unaware of the assistance available and the network of parents in the central NY area is poor.
	1 (1%)
	Families ( parents) who don't cooperate or lie.
	1 (1%)
	There are no openings in Day of Res Hab programs. Not enough services for consumers or families
	1 (1%)
	Getting information on a timely fashion. The parents having their own ideas versus the clients ideas. (being a mediation) If a problem ariaes for the individual or family member to contct the service coordination.
	1 (1%)
	It is cometimes difficult to connect famiies to services outside of the agency. Many schools and medical practices do not provide informaiton on programs available, and not enough outreach is adone by program's. Lack of funding is also a problem over all.
	1 (1%)
	Short Staffing
	1 (1%)
	Lack of receation/socialization services for 5 to 12 years old. Lack of adult socializaiton activities, especally on the east dend of LI for adults. Difficulty setting Rest Hab due to staffing shortges (as well as home heatlh aides, Personal Care Aids, and nurisng services) Very long waiting lists for residential placement even wife NYS Cares.
	1 (1%)
	Communication sometimes breaks down when several people are involved in the care
	1 (1%)
	Explaining finanical resourcds to families Low to apply, what is available, etc.
	1 (1%)
	As the Administrator for Enrollment of a large agency, I frequently get requests from families/neighbors trying to help an older person obtain services who has never received services before. If the older candidate is more than 40 years old or went to school out of state, it can be difficult to impossible to obtain records that document a developmental disability prior to age 22. The OMRDD eligibility process for these individuals can take up to 18 months. This is very frustrating to the families/neighbors who are trying to help them secure the services they should have received years ago. Inexperienced or less than motivated MSC's can really hinder the Enrollment process. In the case of almost 1/2 of all referrals it can take 6 months or more to get the MSC to secure the documentation the agency needs to complete the referral and enroll the individual. Even today, I have contact with MSC's who do not know the difference between OMRDD Eligibility and HCBS Waiver enrollment. Turn over among MSC's is also high among some providers and this is also a factor in getting needed information regarding an individual's referral for services.
	1 (1%)
	The increased documentation that is now required as Medicaid funded programs.
	1 (1%)
	Our families move around quite a bit and do not have working lines of communication (ie- telephones). Also, finding staff to provide the services is always an issue.
	1 (1%)
	some challenges that i have experienced are the lack of funds, which leads to the lack of staff. along with staff it is hard to explain to these individuals the turn over. how do you explain why the turnover is so great when everyone who works with me does a great job?
	1 (1%)
	sometimes it can be hard to provide services when the families are not as supportive as others. It poses great problems when families are in denial of siblings/children having disabilities and so providing services in that environment is difficult.
	1 (1%)
	-Inability to downsize large programs due to fiscal neutrality demand and lack of affordable housing. -Difficult hiring and retaining good staff members
	1 (1%)
	The issue of reliability is subject to being fully staffed. Due to inadequate contract funding, (not even a cost of living increase in years!) we have not been fully staffed for years. Also, due to the rise in other operating costs; fuel for vehicle, health insurance, etc. services have been reduced in each of the last three years.
	1 (1%)
	- Working with students with severe and multiple disabilities who are aging out of school aged programming we are having difficulty finding adult placements for these students. Often agencies have long waiting lists, or will not accept individuals due to their extensive equipment needs or because they are private pay versus Medicaid. Out of 4 graduates last year only 1 was accepted in a program. That is unacceptable! - Community Transition part of IEP completely innapropriate for students with severe and multiple disabilities. Many families refuse to complete as it is unrealistic.
	1 (1%)
	It is extremely difficult for more independent individuals living in the community to access concrete services such as housing. It is also extremely difficult to obtain services for individuals with developmental disablities and mental illnesses within the dd system. It also seems as though the system continues to assume that the majority of individuals with developmental disabiltieis are residing either in residences or with capable concerned family members, and options and opportunities are not really geared to individuals living independently in the community.
	1 (1%)
	Unfair pay, staff turnover, inadequate resources, families are uncooperative with service attempts, competing with state agencies, funding specialized poistions, finding adequate pool of needed educational levels, lack of jobs in the area for people with disabilities, increasing medical needs, rising health care needs for staff, working with dually-diagnosed individuals, creating more recreation, arts, and cultural opportunities,
	1 (1%)
	Our greatest challenge presently is determining eligibility for individuals who have been referred for services. It appears that the eligibility requirements for testing as well as documentation to provide proof of a disability have become so strict that we are having difficulty in getting people approved for services. The process is excessively long and time consuming. It is also placing a financial burden on families who have to pay for special testing, if they are fortunate enough to find a professional qualified to administer the test. Our agency has also had to pay for this testing on several occassions (without the benefit of reimbursement) as the individual or family did not have the financial means to do this. Most of our area schools do not administer the specific tests that are now required. This leaves a large void in being able to submit the required paperwork just to determine eligibility.
	1 (1%)
	Conflicts, rather than effective collaboration, between DDSO and an ARC when both agencies are providing services (not always, but enough to cause concern) Inadequate awareness on parts of physicians regarding services available to these individuals, and referral to these services Dearth of mental health providers in our area available and trained to evaluate and/or treat these individuals and their families
	1 (1%)
	Engaging and keeping the individual and families engaged. Individuals and families become discouraged with all the paperwork and process to recieve services. Engaging employers, many employers cannot see past the disability to all of their abilities. Affordable and available housing
	1 (1%)
	In rural areas: access to medical and dental services, no public transportation, lack of affordable housing and residential options, mental health services for dually diagnosed, lack of sex offender treatment options. OMRDD Eligibility process is long. Educating community on inclusion and least restrictive environment. Regulations remain very restrictive in many areas (SED/OMRDD) and intrusive to persons seved in other areas.
	1 (1%)
	Getting people to acknowledge that they needed to make their services accessible. Changing attitudes toward people with disabilities was really hard.
	1 (1%)
	Behavioral issues with children, especially those with autism. Some of the behaviors are so severe, we cannot safely accommodate them. We are working on this! We are seeking SKIP Training and interventions.
	1 (1%)
	The area that is most challenging is finding mental health services for consumers. It is difficult to provide a consumer who is mentally retarded with a counseling service or even finding someone who is willing to evalute them for their disability.
	1 (1%)
	Challenges infinding psychiatric help for consumers in the community. Some consumers are not always compliant. Government agencies with guidelines that do not assist one another in assisting or helping the counsumer.
	1 (1%)
	Workforce Issues, Reliance on Medicaid for service funding with commitant paperwork. Ordeal, family expectations vs. service system constraints, unfunded mandates, everybody spent on complaince issues of minor meaningful import.
	1 (1%)
	The major challenge in providing services is transportation.
	1 (1%)
	The biggest barrier we have had to overcome is transportation. Many of the services are centered in the Middletown area and many of the families work with in Newburgh have no transportation and, therefore, no way of accessing those services.
	1 (1%)
	The challenges I have experienced in providing services/supports to disabled individuals & families is providing education/information to staff & potential employers regarding the disabled. Erasing the sterotypes and providing knowledge along with education is the key to understanding & acceptance.
	1 (1%)
	Transportation costs overall and lack of adequate funding for actual costs. Availability of transportation services for individuals in rural areas (i.e., for those who do not live on established bus routes) and for those involved in supported employment. No aging-out funding for individuals interested in prevocational services. Only available for day habilitation services. Lack of a clear mechanism to have rates adjusted, to address the increased needs of an aging population, for CRs that were converted to IRAs. Surveyed as an IRA but staffed at a CR level. Health Insurance Costs Staff recruitment & retention issues (i.e., direct support and nursing staff). Changes in Medicaid (new coverage codes) lack of understanding of importance of codes or applicability by local social services workers. Also difficult to obtain needed corrections at local social services level.
	1 (1%)
	Some of the challenges includes providing the consumers with appropriate after school program, housing and other recreation programs such as summer camps which mets their needs.
	1 (1%)
	Not very many - I guess just budget. Everyone person one serve wants to be here and is excited for it, but because of budgets, wew don't have enough money to be able to do all of the things that we culd, or pay staff (therefore losing good staff because of money issues).
	1 (1%)
	- difficulty in recruitment of persons who can provide service in the field (reshab, dayhab without walls) who have experience working with people with disabilities and who can work independently - high costs for travel in rural area - slow turn-around time on SCR (leaving consumers without services while a new provider is being checked) - every changing regulations - Medicaid approval that takes more than 6 months - students are not ready for life after high school either living independently in the community and/or for employment
	1 (1%)
	1. Economic impact on procuring subcontracted work for work centers, enclaves, and storefronts. 2. Funding - we have in many cases provided services without being reimbursed for these services. 3. Coordinating funds/staff availability to coordinate valued outcomes. 4. Lack of space.
	1 (1%)
	OMRDD eligibility criteria as well as the length of time it takes to pursue the eligibility process and get a determination. Medicaid eligibility and lack of availability of supports for individuals who do not have Medicaid. Emergency service availability. Transportation. Lack of vocational (employment) opportunities for individuals who want to work but have support needs (behavioral or medical) which affect opportunities.
	1 (1%)
	Too much paperwork - much of the required MSC paperwork is redundant The time would be better spend locating and maintaining services for individuals.
	1 (1%)
	Eligibility Determination is a difficult process to negotiate. Often the "required" paperwork does not exist and people in need of assistance are spending a lot of time waiting for the services that they need while other people are trying to gather the required information. With the revised criteria for determination, I sometimes see people denied services where they appear needed and appropriate to me.
	1 (1%)
	Challeneges primarily come from families who tend to enable the individuals too much or discourage them from reaching their fullest potential. Also, we have run into challenges from management regarding servicing the individuals.
	1 (1%)
	Without a doubt the biggest challenge is dealing with the Medicaid office now located in Albany. The new rules they recently introduced has made it virtually impossible to buy any piece of equipement for an individual that needs anything more than a cheap piece of generic equipment. The letter of justification they require is now over ten pages long and the majority of this letter is purely to educate the reader not to actually justify the item. This has caused I believe many therapists to advoid the hassel by recommending inappropriate equipement which potentially may end up costing the state a lot more in money due to pressure sores etc.
	1 (1%)
	Their limited cognitive abilities challenge the speed of effectiveness.
	1 (1%)
	There seems to be some fear of not being accepted and that is not without foundation. We lost a family because of comments made by someone who was not patient nor understanding. If the family member who brought "Max" had not let one person rattle her there might have been a different outcome. My attempt at emotional support was ineffective largely due to her history of "personal defeats". How much can a caregiver take?
	1 (1%)
	none
	1 (1%)
	when the student is borderline, they may not reach the criteria yet VESID will not be enough support. Also, some parents do not allow their children to move ahead or exhibit any independence.
	1 (1%)
	The amount of staff turn-over makes it difficult at times to ensure that everyone is always "on the same page" concerning goals and planning for the individuals. There is not enough time to do everything that myself as a clinician would like to do.
	1 (1%)
	- Difficult sometimes for families to change their mode of thinking on services (i.e. If an individual has been in a workshop setting for many years- they may be better suited for a day habilitation program and it is difficult for family to accept). - Communication challenges with some of the individuals- finding different ways to ensure they are understanding and learning the skills. - Turnover is a big challenge in providing services and support. It puts added strain on the long-term staff, difficult on the staff, the individuals and their families who have to get to know someone new and start over in building a relationship. It often takes a long time to get new staff interviewed, hired, trained, and able to independently support the individuals. The reality is that most direct care employees don't view their job as a career- they view it as a way to earn money until they can do something different (to make more money or to get a job that is more of a career). Many of the direct care staff have good hearts and do a great job while they are working with the folks. - Along with turnover- sometimes the staffing ratio is too low and it makes it diffiuclt for direct care staff to provide the services- it gets difficult around lunches or other times when staff have to just focus on the physical needs of the individuals (feeding/changing/behavior) and don't get a chance to run quality groups
	1 (1%)
	One major challenge has been the difficulty in implementing specific behavior supports when there is not enough direct care staff to do so. There are several individuals who might be able to progress in their social and adaptive skills if more opportunities could be offered for more intensive replacement behavior training. This would also take the emphasis from "reactive" strategies to "proactive" and possibly reduce allegations and incidents of abuse. Another challenge has been playing "catch up" in terms of meeting the needs of individuals with dementia and aging issues. Several people are currently in 2-story homes when they have difficulty climbing and descending stairs. There are also still houses with at least 10-12 individuals residing. I know that this is an area that is already being addressed, but is still a concern. A third challenge is having quality direct care staff to be able to have some consistency and reduce turnover. As a clinician, it is difficult to evaluate individuals over time when I end up interviewing a different set of staff members at each 6-12 month interval. There is also difficulty in getting adequate training to staff due to limited resources within our department. At the moment, I am responsible for a caseload of more than 70 individuals at 3 different day program sites. I have one assistant, but could provide better quality services with an assistant at each site.
	1 (1%)
	1)It is often challenging to get staff to follow through with clinical suggestions. Staff working with these individuals on a daily basis seem to feel rushed and limited as far as time available to really allow the individuals to take advantage of opportunities for independence. Often times this is due to the agency being under staffed. 2)Also, the needed adaptive equipment may not be available for the individuals to work with at times and the agency may not be able to purchase these things.
	1 (1%)
	1)It is often challenging to get staff to follow through with clinical suggestions. Staff working with these individuals on a daily basis seem to feel rushed and limited as far as time available to really allow the individuals to take advantage of opportunities for independence. Often times this is due to the agency being under staffed. 2)Also, the needed adaptive equipment may not be available for the individuals to work with at times and the agency may not be able to purchase these things. It is also often very difficult and time consuming to justify adaptive equipment for coverage under medicaid.
	1 (1%)
	test
	1 (1%)
	Total: 156

	Reasoble reimbursement rates that would put less stress on staff to shorten encounters and see mot clients in a shorter period of time
	1 (1%)
	Being able to be creative and flexible. Being able to respond to a need or request quickly and efficiently. To feel valued by both the state and individuals and their families. I sometimes feel like the voluntary agencies are merely a "middleman" adding to the cost of services without being able to add value. It feels like voluntary agencies are treated like "window dressing" for state operations but never trusted to make independent decisions. We can't even determine eligibility for services now...OMRDD must make that decision.
	1 (1%)
	Training. Enhanced time management skills for myself. Less redundant paperwork.
	1 (1%)
	More responsive services More individualized care Less assumptions that all children fit into the same mold. Understanding that parents require more help
	1 (1%)
	- Watching the consumer achieve his/her Valued Outcomes. - Helping families take the steps necessary to move their children into group homes.
	1 (1%)
	better DME providers in new york -- more community reentry program sfor adults with brain injury
	1 (1%)
	More supports for families with persons who have developmental disabilities who live in the community.
	1 (1%)
	To see individuals and families get the supports and services they ask for and to see them respected.
	1 (1%)
	Having the ability to assess and determine services and programming based upon individual need rather than applying a general protocol would provide for greater success and greater acceptance among our consumers and their families.
	1 (1%)
	my work with individuals with developmental disabilities and their families is rewarding and valued by most of the families
	1 (1%)
	My work with individuals with developmental disabilities is constantly rewarding. However, what remains frustrating is the inability to find appropriate services for individuals with severe challenging behaviors and dual diagnosis. These individuals tend to be shuttled between systems with a lack of a mechanism for resolving disputes. Clearly, individuals gravitate to the most service rich system. This system is, without question, OMRDD, and this taxes OMRDD and leads to a tightening of eligibilty requirements.
	1 (1%)
	Our work is valued and rewarding. I feel it would be great if we could offer our staff more "rewards" for doing a great job; going above and beyond, etc.
	1 (1%)
	Cost of living adjustments, mileage reimbursement commensurate with the actual price of gasoline. Decrease length of time on waitlists for services.
	1 (1%)
	It is rewarding now because of the interdisciplinary team approach I mentioned above. However, we need to be even more creative in serving the high-IQ autism/Asperger's adults because their needs are great but very different from those of MR adults.
	1 (1%)
	What makes it valued and rewarding?? I cannot think of a job that could be more rewarding. The community at large may not understand the value of people with developmental disabilities. It is our diversity as a species that gives us our strenght. People with developmental disabilities teach us things about ourselves that we would learn in no other way. They stimulate research that benifits all of us. We need a PR program similiar to the one the NASA uses to justify its presence.
	1 (1%)
	I find the work very rewarding and families tell me they find the service valuable.
	1 (1%)
	The freedom to actually facilitate the personal goals people try to set for themselves would make my work more rewarding. In the past, using Person Centered Planning, the "circle" will get together and encourage someone to hope and dream about their future, but other than making small changes, not being able to help someone realize really important goals is frustrating and discourages that person to even dream what could be possible. Big goals like moving into an apartment or not having to attend a day program, or even go get further training can't be realized without funding .
	1 (1%)
	Seeing any gains toward independence or a parent feeling a greater sense of support as he/she becomes less isolated.
	1 (1%)
	To be able to know more about the individuals background.To be able to pick up the phone to let the parents or caregivers know what is going on at the moment.Not to wait and let them read about it on a write-up 3 days later.To be able to work as a managed team and be all on the same page to help cilents
	1 (1%)
	Follow-up on individuals as they transition from school. Employment outcomes from VESID so schools can see what is and isn't working and can improve transition planning for future students. More person-centered outcomes for individuals.
	1 (1%)
	If the referral process for Medicaid and other services through the Office of Mental Retardation and Developmental Disabilities was streamlined. A child/adult would get straight medicaid based on their diagnostic evaluations alone and not the income level. Also, if there were more agencies that completed evaluations so parents would not have to be on waiting lists.
	1 (1%)
	Increase funding that goes directly to care workers rather than their employers who tend to pay management first over the workers on the front line.
	1 (1%)
	I already feel that it is valued and rewarding
	1 (1%)
	It already is.
	2 (1%)
	I already find my work valued and rewarding.
	1 (1%)
	continued supports from school
	1 (1%)
	Stronger Mental/Emotional Health compliements to direct care for the developmentally disabled and for their caretakers.
	1 (1%)
	I feel that the service we provide our families is invaluable to us and to our families in return. We have been able to start some new activities for our families. We do sponsor a Challenge Baseball team, have been instrumental in bringing back developmental soccer programs to our area. This has expanded into TOPPS Soccer and then into the special olympics programs. I would like OMRDD to look at their restriction on the the IQ levels. We have families that techincally cannot be served by our agency because their IQ fall between the 70 to 75 range.
	1 (1%)
	It has been rewarding but the needs are overwhelming sometimes. We are not always able to help with emergency respite services.
	1 (1%)
	I find this family based service the most rewarding in my 37 year carreer.
	1 (1%)
	This is covered in my comments in the first box.
	1 (1%)
	More emphasis on providing care based on professional standards of disability and less emphasis on the need to produce paper work to demonstrate a persons needs. OMRDD needs to work much more closely with OMH, OCFS and county agencies dealing with people where the eligibility criteria is difficult to prove on paper.
	1 (1%)
	Already feel that our work is rewarding.
	1 (1%)
	To have the technology and the transportation to aaure people carry through with what needs to be done. Helping people reallize realistic goals. Communication between community organization to better serve people. Especially peoople that don't speak English as a second language. Portuguese, Russian, etc.
	1 (1%)
	Letting therapists/family determine the therapuetic milieu for the child/family within reason and allow for more flexibility. Eliminate the term early interventionist and recognize each different provider and their expertise to reduce confusion and good intentioned providers from giving/doing techniques that are contraindicated for a child/family progress. Making parents accountable or attempt to be involved with their child's services. This is not always possible due to other children, family stress, parent's own needs, etc. There are also many times when parents can be available and involved, but choose to use therapy time for phone calls, watching TV, cooking, gardening, etc. Despite speaking with the parent, these distractions/behaviors often continue, and when the Ongoing Service Coordinator is notified, little or nothing is done. Then, we become glorified babysitters. Attempting to match a providers expertise with the child/family's needs, rather than choosing providers based upon where they live, because it is their turn, etc. Matching expertise of the provider with the child's need seems to be a immediate and efficient means for cost containment.
	1 (1%)
	Being able to have the flexibility to try a number of modalities and/or equipment before choosing one would help. Also, additional time to meet with families and all team members would improve follow-up and effectiveness of our work.
	1 (1%)
	For me personally my work is valued by the agency I work for, the families, school districts and counties that deal with on a daily basis therefore my work is very rewarding. As with any provider less paperwork would be appreciated.
	1 (1%)
	Seeing improve independence, quality of life and inclusion into the community
	1 (1%)
	It already is very rewarding. In general, families are very appreciative of what we do to support their efforts to help their child grow and develop. I love to watch the children grow into happy, productive young men and women.
	1 (1%)
	Have the tools, materials, equipement that I need to work effectively with the individuals. Improve support staff hire. Be able to stay with the latest trends when dealing with assistive devices, adaptations,etc.
	1 (1%)
	Knowing that the services provided in school were linked to post-school outcomes.
	1 (1%)
	Making getting appropriate equipment and getting malfunctioning equipment more family and consumer friendly.
	1 (1%)
	My interactions with families and great case coordinators has been and remains extremely rewarding Remunerating us for mandated and essential meetings
	1 (1%)
	I would like to see less money supporting a cumbersome administrative apparatus in both the education and health care systems. I would like to see less energy spent in the development of politically correct buzz words during election years. By that I mean less political connection to services provided in schools and clinics. I would like to see value and support given to the "work" of helping children and their families. I definitely would like to see more people make distinctions between their religious beliefs and the entitlement to equal education and health care for all.
	1 (1%)
	I think the work is valued and rewarding. It would be more so if I could get them services faster.
	1 (1%)
	Personal contact, the feeling that I make a diffrence
	1 (1%)
	I already feel this way. The families with which I have worked over the past 30+ years demonstrate so much pleasure seeing their child do something new for the first time, walk or eat or draw etc and the pleasure that I get from that is all of the reward that I need. The other reward I get is that NYS values what we do and will continue to offer financial support to it.
	1 (1%)
	Greater consumer input.
	1 (1%)
	Ability to see and experience the changes/adaptations that clients have made, less limitations on number of visits, and of-course higher reimburesement rates.
	1 (1%)
	It is frustating to see staff turnover and its affect on consumers. Adequate Medicaid reimbursement rates for community-based services would allow providers to hire an adequate number of staff and reduce staff turnover. Having a stable team of professionals, individuals with developmental disabilities, their family members and their circle of support would improve the quality of the services provided.
	1 (1%)
	For not-for-profit organizations: Greater and more consistent financial support. Access and funding based on performance, accomplishment and accountability. More creative public sector approach to consistent funding. Inclusive media coverage. Attitudinal change in relation to people with developmental disabilities.
	1 (1%)
	Pay increase based on performance, and higher grade pay in general for this position.
	1 (1%)
	I am rewarded by the successes of the child and the family. My work is valued by them and therefore valued by me. However, it would be nice to be recognized for the work that service providers do, possibly with a salary increase.
	1 (1%)
	More money, less case load , less state paper work that is completely useless
	1 (1%)
	It is rewarding & valued in our community
	1 (1%)
	Increased focus on the consumer and less on the organizational structure. TOo much tme is spent on paperwork, documnetation some of which is redundant and repititive.
	1 (1%)
	The ability to be creative to meet people's needs The ability to offer incentives to consumers and families for their involvement in planning and program delivery The ability to pay staff more to attract and reatin high quality staff and reward them The ability to develop programs and services that meet people's needs, draw on natural supports, and build capacity
	1 (1%)
	A sense of pride, and accoplishment, so many times I meet families that feel they are entitled to everything to be paid for or free. I would like to see a mindset change that all these services are not free that the state has available
	1 (1%)
	As a MSC, I find it frustrating to hear concerns from families about residential or day programs and I am in no position to implement any changes. I am concerned that implementing programs of value to individuals are not done. and that individuals who live in some IRA's do not have opporturnities to get out in to the community as often because extra staffing is not available. Once an individual is placed, I have little control to make any of the day to day decisions. I can suggest and request, and offer to look at other programs, that is all.
	1 (1%)
	making sure the dreams that the individual has comes to fullfillment in a timely manner. That more individuals are having dreams of a future...
	1 (1%)
	More appreciation from familes. Most families don't even say "thank-you" for helping them.
	1 (1%)
	I don't know that there is anything else besides the relationship we have with families that would make it more personally rewarding. I do think that more flexibility in funding needed services for families would make THEIR experience more rewarding. Having the ability to select items from Column A and from Column B, regardless of the primary funding source (OMR, DOH, OMH) would be a blessing to us as a provider community, as well as for the families we serve.
	1 (1%)
	A greater abundance of the above-stated services.
	1 (1%)
	Easier access to transportation for families in rural areas.
	1 (1%)
	The ability of our vulnerable clients to function in the community with support from their ICM.
	1 (1%)
	Correction to the above concerns.
	1 (1%)
	slightly higher pay for direct care, and a purposeful move to carve out services to the disabled as a valued carer.
	1 (1%)
	more support and education for agencies that may not deal with the same issues as we do on a regular basis, but who impact the services we do try to provide
	2 (1%)
	It already is or I wouldnt be here 17 years later. Observing growth is wonderful.
	1 (1%)
	I believe it already is valued and rewarding.
	1 (1%)
	I generally feel valued by parents of children we service. We are arranging for a special day to honor providers during April, 2006, which is the month of the young child.
	1 (1%)
	My work is already very rewarding to me.
	1 (1%)
	I find my work with children and families very rewarding. I enjoy my position very much. I am not certain what would make it "more rewarding." Possibly, decreasing the bureaucratic and financial issues of the early childhood development field, though I know that these are elements that are present in any line of business. Focus on the child and family is so important.
	1 (1%)
	My work currently is valued and rewarding. I beleive that the availability of supports and services and ease of obtaining those services would enhance that.
	1 (1%)
	n/a
	1 (1%)
	Educational Advocacy: The demand for educational advocacy is likely to increase even more, at least on a temporary basis, with the reauthorization of IDEA. Disability Awareness and Education: People have a very hard time understanding learning disabilities and the fact that while someone may appear to be fine and they may even have an average IQ, they still need assistance in their daily lives. Co-occurring Conditions: Many people with learning disabilities have co-occurring issues too such as substance abuse or mental health issues. Unfortunately, they do not fit any of the pre-set "boxes" our service system has created and many of them fall between the cracks.
	1 (1%)
	See other comments.
	1 (1%)
	Inclusion in schools is something I'm involved with via a project called the Inclusive Arts Project, which establishes inclusive learning environments with an integrated arts curriculum in middle schools across the city. We are evidently at something of the forefront here, working with schools that wish to push beyond the usual inclusion models - very limited, usually with "high incidence" students with LD's. We advocate for students of widely varying capacities to be taught together. And incorporating differentiated instruction practices for appropriate accommodations of learning styles.
	1 (1%)
	Finding ways to assist schools to promote inclusion and more inclusive options other than self-contained classrooms. Assisting to provide clear information to schools about NYS Guidelines.
	1 (1%)
	A consistent and widespread public media campaign which praises the work of direct care professionals and creates an image of it being a valuable and worthwhile professional career choice.
	1 (1%)
	better wages for all direct care staff
	1 (1%)
	1) A raise in base salary. 2) An increase in mileage reimbursement, at least equal to the mileage reimbursement provided/suggested by the Federal Gov't. 3) Reduction in paperwork, copies, copies, copies of the same stuff to everyone in the world. Get a serious database so once we update a consumer's address, it goes everywhere - to FL DDSO, to Albany, to every portion of the local database (SEMP, Pre-Voc, Clinic, Day Hab, Res Hab, etc.)
	1 (1%)
	To be able to provide services in a more timely matter
	1 (1%)
	The ability to facilitate quicker service delivery as well as provide experienced professional staff to meet the unique needs of the individual with developmental disabilities.
	1 (1%)
	I find value in the work I do. With increased resources I feel I could accomplish greater independence and general life satisfaction for those I serve.
	1 (1%)
	My work is very rewarding. Public education on disability awareness and the human service field would make it more valued.
	1 (1%)
	Individualized programs and consumer choice are wonderful concepts, however, if you cannot find the staff to provide the services, the families are left feeling doubly frustrated and exhausted. When workers are hired to work privately or as Respite or Res Hab workers it is often a second job. This is a position that they often will call in sick to, or not take as seriously as where they obtain their benefits. We need to have the resources to make these postions more appealing. Another idea would be to move to more social/group activities where we can provide the services in a congregate setting. Not a popular idea these days, however, if one staff member calls in sick, the family will still get the service. When families rely on services that are provided on a 1:1 basis, they are often dissapointed or frustrated by retention and hiring issues.
	1 (1%)
	Working with families on individual needs and client-specific assitance to achieve goals is rewarding. Each family that we are able to establish a relationship is what makes this work valued and rewarding. The opportunity to work with a family to increase their awareness, education and advocacy skills is a wonderful opportunity for providers.
	1 (1%)
	Positive attitudes for the assistance that we provide. Many times we encounter people distressed because we cannot provide assistance due to a lack of staff or availability in the program.
	1 (1%)
	I believe that currently the work that I do is vauled and rewarding. Hopefully soon we will have a literacy OPTS proposal so that we can start teaching more of participants reading.
	1 (1%)
	Availability and accessiblity of services, programs, especially Respite and Res Hab. People lose their jobs, and we lose the taxes they pay, because they have no one to care for their family members, especially the ones who have aged out of high school.
	1 (1%)
	To give them an opportunity to provide support to help them earn a living and to accomplish goals they would never be able to without our support.
	1 (1%)
	Increased support for true self-determination, including assistance for consumers wanting to secure services on their own terms, and looser regulations to accomodate their desires.
	1 (1%)
	Our goal is to achieve 100% consumer satisfaction. To meet this goal, we will establish the following guidelines: 1. strongly encourage 100% participation with consumer surveys 2. quarterly social activities with consumers and familied\s 3. quarterly checkpoints with DDSO staff/liasons 4. will negotiate with DDSO to increase our budget to support administrative personel, programs, postage, and various in- house activities.
	1 (1%)
	getting staff and head supervisors that really care instead of people who treat these individuals like garbage.
	1 (1%)
	I feel that it already is. I know that we, as an agency provide a vital service to the families we serve. I see it in the consumers faces, when I read daily notes and hear it from the families. That's enough.
	1 (1%)
	My work with people with disabilities is already rewarding. Rate of pay and benefit options, however, is always a concern for the field.
	1 (1%)
	*Ensuring a healthy, happy personna for each individual. *Providing a safe/comfortable environment. *Meeting emotional needs. *Good communication with other service providers to promote the consumer's best interests. *To see our consumer's rights truly respected in all facets of their lives (going to church, social events outside of day program, etc. *Open door policy.
	2 (1%)
	If I could simply say, I have made an appointment for you to take your son to a specialist. This doctor will be able to fill out the papers needed to get your son in special education, and also get him some adapted equipment that will make his qualilty of life much better. This appointment will be next week, and it will be in our community. We should have everything in place within the month!!
	1 (1%)
	Seeing the accomplishment of those we serve. Improved pay or pension/benefits.
	2 (1%)
	I value my work, and it is often rewarding. There are areas (general health, mobility, maintaining medical devices) where I have seen decline in the individual's oversight and care, and in general, those areas are becoming more difficult to maintain for the clinician. Adequate health oversight of consumers by experienced clinical staff who come in contact frequently with the individual would make my job more rewarding. Having clinical staff more present to direct care staff would allow health issues to be addressed sooner, before they become bigger problems. Often, in a consultative model as we now have, the staff (direct care & managers) who are the direct providers do not recognize issues as problems, or wait too long to act. Whan they have clinical staff as frequent resources, more issues are addressed sooner; prevention becomes the driving force and health is better maintained.
	1 (1%)
	I already find it very valued and rewarding to provide services to the families and individuals. Less paperwork and more time to focus on the people we serve would be nice!!
	1 (1%)
	Better pay for workers who accept the challenge of the job every day. Less bureacracy, paperwork and hoops to jump through just to get a little money. More time with people and less time with paper. Information for the community to help with outreach and integration. (ie: making things accessible, and acceptable) Lower caseloads for MSC's
	1 (1%)
	Just seeing the smiles our rec Club members have for our activities
	1 (1%)
	Being able to get needed services
	1 (1%)
	Working with the disabled is rewarding and very much valued. Being an advocate and giving assistance and seeing the results of working together
	1 (1%)
	So far, the work itself has been very rewarding. If would be much better, however, if salaries for direct care/suport staff we're higher
	1 (1%)
	Better compensation. Service coordination is a difficult job with many responsiblities. The field is primril, populated by women, who frequently must work mor than one job in order to make ends meet. It is disheading to work hard, and still not be able to make ends meet on pay day. The same can be said for direct care staff, many of whom also work more thatn one job. The work is rewarding but long waits for servies and lengthy processes if frastrating.
	1 (1%)
	Being able to keep our person with disabilties in his own home is its own reward.
	1 (1%)
	Ind, DD and family members tell us directly the valve of our program
	1 (1%)
	For me the greatest reward is when I can finally link an individual or family with the services they need. Once I know that's been accomplished I rest easier.
	1 (1%)
	Spending more time in programs with consumers instead of doing self-audits, checking completed paperwork, and documenting it all. I know it's necessary due to the funding source but there has been no increase or consideration given to the increased administrative oversight costs.
	1 (1%)
	Increasing the quality of life for individuals in regards to socialization and community exposure. Being able to provide our families the assistance they need in a time of crisis (ie- housing, food)
	1 (1%)
	i find that teaching the individuals to do more is rewarding for me. when i first started i thought i would do most activities for them but now i see that they can manage most aspects of their lives. but the down side to this is that sometimes it take more work and time to train and mentor these indivduals to do things on their own, then for a staff person to do it for them. so it is a cycle that leads back to staffing.
	1 (1%)
	I think that the work is already rewarding. You know when it is valued when families call to say thank you or you can witness first hand the respite that parents/care givers get when their child/consumers are given outside respite services. they need a break and juat talking to them and undersanding how much they value that break is rewarding enough in itself.
	1 (1%)
	Ability to respond more quickly to individuals' needs Changing the way the general public views people with developmental disabilities
	1 (1%)
	Our own surveys, and those conducted by the local Family Support Council and DDSO indicate that we consistently hit the mark of services being valued and rewarding. The comments do include the desire for more services generally, (especially from remote households where the issue of transportation is an absolute bear), and for more day long services on weekends.
	1 (1%)
	I would love to be able to send a graduate off knowing that they have the necessary supports and services available to them that they will need to succeed.
	1 (1%)
	To see more services and opportunities that provide for true integration/inclusion in community life, as opposed to separate programs within the community that mimic what is available to non-dd individuals
	1 (1%)
	Less oversight and structure from state and federal government, increased funding for services, too much paperwork takes away from quality interaction, increased staff, better pay for overnight positions and holiday coverage, more resources to educate local families about disability, funding residential housing for 2 and 3 consumers, systems to help identify unmet needs in local communities
	1 (1%)
	It appears as though when we finally develop systems to access systems more easily, the rules or requirments change. It would be more satisfying to have provisional eligibility (based on diagnosis and current records/testing) given for a short period of time, with the stipualtion that the new required testing be administered within a designated time frame or the provisional determination will be terminated. At least this way, individuals who need the supports and services the most will be able to access them more quickly. It is most satisfying when you can provide the services to people.
	1 (1%)
	It already is. I find that most of the individuals and their families are very appreciative of help provided, and I find the work very rewarding.
	1 (1%)
	To give them the services they need in a timely manner. Make eligibility requirements less restrictive. Individuals with an IQ between 51-80 are difficult to obtain services. Transportation is a big issue also, if the individual is approved for services it is sometimes difficult for them to physically get to the service.
	1 (1%)
	Ability to have resources to respond to truly urgent needs. Recognition of provider community. Rewards come from a child or adult served succeds or when a staff member excells.
	1 (1%)
	To see that more places in Schuyler County were accessible and continued to be accessible so that all could enjoy the community.
	1 (1%)
	It is already! We really love our program!
	1 (1%)
	I feel that my work with consumers is already rewarding. It would be more rewarding to be able to assist them with the services that are presently absent.
	1 (1%)
	I find my work satisfying when I am able to assist consumers with getting the supports and services they need. Especially, when the consumer is in dire need and wants the service provided. I have to fight sometimes to get the consumer what they need; however, it brings great rewards when they are happy with it.
	1 (1%)
	More time to use and share clincial skills that assist families and providers in meeting needs and interest of consumers, a more healthy quality. Better evaluates workforce to staff programs; money for supervison and training after work hours.
	1 (1%)
	Seeing the individuals with disabilities succeed.
	1 (1%)
	Assisting individuals and their families in accessing programs that will enhance their quality of life makes my job rewarding.
	1 (1%)
	My work with individuals with disabilities is valued and rewarding. Providing information regarding supports & services available to someone who is not sure of where to turn is very rewarding. Assisting an individuals in their search for employment (developing resumes, providing employment & readiness trainng, information regarding job opportunities and most rewarding is getting the call that they are employed. Having more employers interested in hiring the disabled would be icing on the cake.
	1 (1%)
	Better Salaries for direct support staff and service coordinators
	1 (1%)
	Working with developmental disabilities population would be more rewarding if the consumers/families had more options in terms of programs/services that met the unique challeges of each consumer.
	1 (1%)
	I already finid it rewarding (money wouldn't hurt, though.
	1 (1%)
	- our MSC would like no waiting lists (especially for e-mods) and a faster Medicaid approval system - a higher reimbursement rate for frontline staff - fewer administrative hurdles - a transportation system in the county that would allow consumers to become more independent so that we could work on a wider variety of goals - more individualized services or the option to get a waiver to conduct a program differently in a rural area than an urban - supportive and educated parents and consumers
	1 (1%)
	1. Experiencing the positive impact this agency has brought to our consumers through Personal Outcome Measures. 2. To be able to provide clinical services as they should be delivered, without worrying about funding. 3. Having more funds and support staff to coordinate actualization of valued outcomes. 4. Ability to offer more choices. 5. Less paperwork.
	1 (1%)
	Individually expressed desired outcomes being obtained. Seeing individuals more fully develop feelings of self-esteem, worthiness and community contributers. People remaining in inclusive communities with opportunities for natural relationships and meaningful lives. Increasing employment opportunities for individuals who have challenges which require intensive supports.
	1 (1%)
	Being able to help individuals feel good about themselves and accomplish their goals.
	1 (1%)
	A rewarding day for me is when I see people / families getting the services that they need and the happiness and/or relief that goes along with that.
	1 (1%)
	See below
	1 (1%)
	Decreasing/simplifying the amount of paper work so that more time can be spent working with the individual and not on a computer!
	1 (1%)
	Progress within their lives feels rewarding to me. When a client tells about a positive social interaction, I praise them and I, too, feel good about it.
	1 (1%)
	I have great expectations, but I savour the little victories! Getting through on the personal level with anyone involved is great.
	1 (1%)
	I'm satisfied now.
	1 (1%)
	transportation to work for students after high school. students sit at home even after they have been successful in school/work situations.
	1 (1%)
	This is a very rewarding field to work in, and I feel the benefits everyday from the individuals I am in contact with. If parents/guardians could be as impressed by the "small steps" in progress that we see, it would make me feel more valued by them. I, personally, am always astounded by the little steps the individuals make, but it sometimes feels like parents/guardians are only looking at the big picture and want their child/charge to be "cured".
	1 (1%)
	- It already is rewarding- when I see the progress of the individuals I work with - Continued support of outside training that will assist me in working with the individuals
	1 (1%)
	Working with individuals and families in itself is rewarding. Opportunities to help someone overcome a difficult time or accomplish a desired goal always make me realize the importance of what I do and why I do it. Some days, what they give to me is the greatest gift, unconditional love and support. I could have a difficult day myself, and an individual I work with will tell me, "I like you" and the day doesn't seem so bad. As for feeling valued, it depends on the relationship and the situation. I have certainly received feedback from families as well as our administration that they appreciate everything I do and how I present myself and so on. There is less understanding from certain direct care staff who seem to feel that problems can be "fixed" immediately by clinicians. There is also a "divide" at times between direct care staff and clinical teams. Some of this type of concern can be addressed through building relationships and trying to train on the limits of certain interventions as well as improving staff's understanding of the individuals we serve.
	1 (1%)
	More staff for more individualized attention to the individuals with developmental disabilities. This way the clinical advice from therapists may be more likely to be carried out. Often times individuals will receive therapy services, achieve a goal, and then when they are discharged from therapy lose what they have learned due to little follow through and assistance from staff, often times ultimately lost b/c of having not enough time. Too little staff in charge of too many individuals. It only hurts the individuals in the long run.
	2 (1%)
	test
	1 (1%)
	Total: 156

	Cost of linving increasesfor agencies and for direct care staff that will help retention of staff, development of more residential alternatives, improved special education services in N. Y. City.
	1 (1%)
	A true partnership with state and voluntary providers. More flexibility in funding to meet the needs of individuals and families in the manner they choose. More rapid response from funding sources. A realistic view of what communities are like these days post-911. Housing costs are going through the roof in upstate communities.
	1 (1%)
	Smaller caseloads. Increased quality providers. More options, but also the trned toward individualization is key.
	1 (1%)
	More community Providers need to be established so that some sense of competitiveness will result in dev. disability Providers developing responsive programs and meet families needs sooner. Also, it may important to develop certain levels of Providers instead of having 3-4 Providers all carrying the same services out.
	1 (1%)
	Consistency of staff providing services - Unfortunately, non-profit organizations do not pay well. Quite often, staff turn over causes consumers and families distress and frustration. Consistent staff who know the history of the consumers they are working with can be very valuable.
	1 (1%)
	more input from those on the front lines--paretns/physicians/social workers
	1 (1%)
	More money for specialized clinical supports such as sexuality education and counseling, psychiatric hospitalizations, and support services such as respite care, residential habilitation, recreational programs. Also, more group homes to decrease the 10 year wait list we presently have in New York state.
	1 (1%)
	Better trained Service Coorinators. Less Service Coordinator turn over. Support staff who respect individuals and are able to effectively comminicate with them.
	1 (1%)
	Allowing apt clinicians and administrators to develop a continuum of programs that will enable individuals with disabilities to move into less restrictive settings when they are ready. Currently, many policy makers and administrators within human service agencies do not have the experience or knowledge to develop meaningful programs. Our agencies are also often weighted down with political appointees whose salaries would better be spent on hiring experts in the field of developmental disabilities.
	1 (1%)
	education of the community in order for individuals with developmental disabilities to be more accepted, follow through from adults in teaching children tolerance and acceptance of others who are different, continued research in areas of need, more personnel to meet the current and projected needs of families for home supports, projecting and planning for increased numbers of adults with develpmental disabilities as medical research increases longevity of these individuals
	1 (1%)
	My honest belief is that we need not offer more choices but rather improve the quality of existing services to ensure better choices. Self- determination is a laudable goal but it is constrained by the availability of the public dollar. The money used by the consumer is not the person's money but rather a gift or grant of public funds.
	1 (1%)
	I feel we still have a ways to go in acceptance of our individuals in the public sector. There are still many people out there who feel our individuals should not be seen in public. Greater public education is needed to change this. I also feel we need to look outside the box more to create the services that consumers are asking for and finding a way to make it happen, while conforming to Medicaid rules and regulations. Medicaid uses a medical model and somethings just don't fit in it. It would be great if that could change.
	1 (1%)
	It would have to take a strong committment at the state level to put more money into the budget to open more day programs and new group living situations. This would be the only way to decrease our waitlists.
	1 (1%)
	More flexibility in understanding the needs of high-IQ autistic adults.
	1 (1%)
	I am a special educator. I am frequently called in when speech, PT, or OT is not working. Sometimes these services have been in place for 6 or more months with little or no progress. The reason these services are not working is usually because there is an underlying cognitive issue,. Often this issue is identfied as "behavioral". One and two year olds are rarely that complex cognitively. Early use of special education can frequently reduce the number of hours an OT or SLP has to spend with a child developing those targeted areas. The impact that special education has on PT is similiar though less dramatic in nature.
	1 (1%)
	1. Community education to increase understanding and acceptance of individuals with developmental differences. 2. Increased funding for research to illuminate educational and therapeutic methods that are faound to be helpful with people of various disabilities. 3. Funding for repair and reuse of expensive equipment, such as staff for loan closets.
	1 (1%)
	I thought that the Self Determination pilots were such a great idea. I know several people who participated in the pilots but know actually 2 who have had their budgets accepted and are using that to make their lives better. One has been using that funding for several years and has moved into his own apartment, is paying for his own wheelchair accessible van, and helping to pay for a staff person to help him. The other person has moved into his own apartment and is using the money to help pay for computer courses at a local college and is starting his own data entry business. The other 7 people I have been involved with and sit on their "circles of support" have not been able to even submit their budgets and have not been called for further information. This was not fair to so many people who thought that the "system" could finally catch up to be able to meet their personal needs. More thought needs to be put into designing services to be able to be "tweaked and bended" to allow people to access funds that have not been traditionally used.
	1 (1%)
	1. Greater coordination of services for the individuals with OMH needs and developmental disabilities. 2. Continue to break down barriers between systems so that we become wellness-oriented rather than serving the deficit, i.e., rather than looking at the disability to determine which system should serve the individual, determine the indivual's or family's goal and which system could best serve that goal according to the individual's assets - currently too much emphasis is put on whether the individual "belongs" to one system or another.
	1 (1%)
	Money,housing, family planning. job services,job coaching,more time mangagement with clients.Some of my clients need child care,food planning.classes to help them cope with everyday problems.
	1 (1%)
	Service providing agencies need to get into the school districts to provide information to students, parents and school staff on available services and local resources. Schools need to provide contacts for agencies to coordinate efforts with. Agencies need more funding to develop community based work experience. Parents need to apply for services(service coordination) earlier and DDP4's completed so appropriate funding can be allocated. Self determination/person centered planning needs to be more promoted within schools and incorporated into curriculums as it directly relates to students participating in their IEP reviews and transition planning. High school students need to receive information on direct care practice as a career goal/profession. Direct care staff need more training and an increased pay scale to reduce turnover and to retain quality staff. More promotion and dissemination of success stories to give students, parents and school staff hope and ideas. Improved transportation options and funding possibilities.
	1 (1%)
	Streamlining the referral process, ensuring those who are higher functioning are allowed access to the same services as their lower functioning counterparts. More emphasis on other forms of employment aside from clerical and maintenance as many clients have expressed interest in wanting more varied vocational opportunities. Allowing anyone child or adult at home or not living at home access to Medicaid so they can get the proper services. Ensuring that as a child progresses he can continue to receive services even after goals are met so the progress can be maintained. Returning the funding to the social service entitlement benefits which have been cut.
	1 (1%)
	Reverse the funding cuts, restore funding and increase it to assure quality and continum of care.
	1 (1%)
	We need to alleviate some of the bureaucracy. Systems are trying to work together at the local level but get caught in red tape at the state level. Especially when it comes to the children with multiple issues.
	1 (1%)
	More opportunities for recreational activities for families with children with disabilities, and activities that work to improve peer interaction skills.
	1 (1%)
	Better communication between the beaurocracies.
	1 (1%)
	continued funding for school activites (and after school programs within the school/community), and home services for the family
	1 (1%)
	A wholistic approach which combines concrete services with disability and life-skills services and includes mental health, individual, group and/or Family Therapy.
	1 (1%)
	We will always need more money to serve more families. We are currently serving 170 families in Oswego County but also have a wait list of app. 50 families waiting for services. Some of these families will wait up to two years to receive service from our organization. Families need to become aware of self-determination. I am currently part of a circle of friends for an young adult in the process of self-determination. It is a long and often difficult road for families to go through. The process may need to be stream lined to make it go faster.
	1 (1%)
	More secured funding options for agencies and the community still needs to continue to get involved on a more personal level to understand the needs of these children and families.
	1 (1%)
	Services that are more often provided in the presence of families. Families that are organized to reach out to other families who need information and support when faced with a child whom is challenged.
	1 (1%)
	The cost of the Early Intervetion Program should be understood at all levels of government as an investment rather than a drain on tax levy dollars. A cost analysis, following the school careers of EI "graduates" -- which should be greatly facilitated when the new EI data system is in place and all EI-referred children receive an ID number that will stay with them through their schooling -- will help to make that point. In the interim, there is an abundance of literature that makes clear that the developmental gains available as a result of early identification and intervention for developmental delays and disabilities reduces later expenditures. The fact that it also improves the child and family's short-and long-term quality of life is also important!
	1 (1%)
	I never hear from people who want "self determined lives". The only people who come to me are those who are desperate for a safe place to live and food.
	1 (1%)
	More knowledge about Community Health Nursing services.
	1 (1%)
	Services need to begin in early intervention and extended through the school age services. School districts are not training their staff and not providiing the needed services for theses children. The children need to be tracked into adulthood. Their needs to be communication between OMRDD & OMH for those p[eople that fall through the cracks without a concrete Axis I diagnosis like Mood Disorders, but Have an Axis II diagnosis, but don't fit in the OMRDD services.
	1 (1%)
	Making parents accountable to some degree or to the best of their ability or as determined by a social assessment. The level of potential involvement of the family would be helpful for the provider to know before services begin to avoid confusion and set clearer expectations of both providers/families. When a child needs a specialized evaluation, e.g. a swallowing evaluation, and it can take weeks/months to get an appointment. Perhaps, a source or pool of specialists could be available for certain predetermined times.
	1 (1%)
	Better coordination between team members (e.g., reimbursed time to meet as a full team -- including the families).
	1 (1%)
	This is difficult to answer, however I believe an overhaul of the medicaid application system would be a good place to start. The school districts I have worked with have been open to providing services that a student needs in order to be as independent and academically successful as possible. I have much concerns with government cutbacks and how this will relate to children and adults in need of services that should be readily available in a just society.
	1 (1%)
	Longer therapy sessions, more therapy services, community education and more funding
	1 (1%)
	Recognition that coordination and training activities are as valuable as providing direct services for improving quality of life for individuals with developmental disabilites and provide the reimbursement for those services.
	1 (1%)
	same answer as the last question.
	1 (1%)
	Increasing the involvement of community agencies in helping to plan for the futures of children with developmental disabilities from the time they reach adolescence, rather than waiting to plan transitions the year before the student exits the school program. Knowledge of the long term plan for each student could help to mold the skills being addressed within the educational program. Currently school personnel have limited understanding of where their students will be going and what skills will be needed when they exit.
	1 (1%)
	MOre training for front line state workers in understanding the challenges of families and individuals with disabilities. training to develop increased empathy for workers who process claims and paperwork. A more consumer friendly process.
	1 (1%)
	Educating the clinicians, especially, that treating children includes places other than the home. Even though therapists have attended mandatory continuing education on this subject, some continue to force the family to conform to their standards rather than the family's needs. If we are to be working in the child's natural environment, shouldn't we be working without our own "props" ? Instead of bringing toys and interactives, shouldn't we be assisting the family in meeting their child's needs by utilizing what exists in the child's own environment?
	1 (1%)
	As mentioned above, it may be a cultural change that I am trying to describe. I am hoping for progress on that value of doing the work, the "hands on" work. I have witnessed too often that the willing and capable people become the exhausted, underpaid and powerless people.
	1 (1%)
	To really have a self-determined life, there needs to be realistic choices and people need to understand consequences for their actions. Often we have to let someone do something because it is their "right" even though they do not understand the consequences and do not have the ability to handle them when they happen. This then puts more work on the Service Coordinator and we have set the person up for failure. I feel there is a lack of common sense and a waist of tax-payer dollars.
	1 (1%)
	Money and professionalization of the direct care field. Increased day programs,
	1 (1%)
	It will take $$. There needs to be more housing so that adults with DD can live in the community. It takes jobs for them to be able to do so that they can feel like contributors to society. It will takes educating society so that these people are accepted members of the community and are welcomed into the neighborhoods. So many people are afraid of the DD population. I have worked with this population for over 30 years with adults and children and acceptance is a big part of these peoples lives.
	1 (1%)
	Consumer input into all processes, procedures, programs and services.
	1 (1%)
	Easier/direct access to services, less documentation, more automony for clinicians and clients, and more finances.
	1 (1%)
	The long-term care system much change from a provider driven system to one where the money follows the person. In addition, the institutional bias (and the promotion of congregate living arrangements) of the OMRDD system must end so that individuals with developmental disabilities have real choices. The state must make more progress on de-linking services and housing.
	1 (1%)
	Another very broad question. Coordinated funding to make access to housing and independent living options possible. Consumer and family awareness of independent living options. Information widely and clearly disseminated. (The more people know, the more the quality will improve.) Focus on educational curriculum and quality teaching in schools to prepare students for post-secondary life. Well-trained teachers and transition planning. Systemic focus on job development and job coaching: recognition and creative training of job coaches and job developers. Meaningful, quality planning through the school years, with inclusion in community through living and working as a goal.
	1 (1%)
	More community integrated program choices to participate in.
	1 (1%)
	As I mentioned before when looking at the challenges these individuals must face, it comes down to fiscal reasons and inadequate training. Working on more staff development and helping out financially for those in need of more education would be essential for those to provide good services.
	1 (1%)
	Get some money in the system to help people and make less of a struggle to get it, You give it to everyone for free but the people with MR. Another thing Pataki why don't you charge at least 50 dollars a month in spendown to everone. We estimate in my office that there 17,000 people on medicaid only about 3000 on spendown so that would work out to be 850,000.00 amonth if you got your state together and stop just giving all the money away or pushing it to your beloved NY city. Do you know that the rest of new your should be seperate from NYC becouse we don't see the money in Chautauqua. But you don't care you just want to run for president, like you got a chance!
	1 (1%)
	a lot of education for families & agencies additional funding collaboration between agencies & districts
	1 (1%)
	Easire eligibility determination through an outreach service. Expanded eligibility will also serve those consumers who fail to meet the current eligibility criteria and have no other service system to assist.
	1 (1%)
	OMRDD needs to get less bureaucratic and more effective Contracts that non-profits have with governement agencies such as OMRDD need to offer increases so that we can continue to offer high quality service and retain high quality staff Better training is needed for service coordinators We need to reward creativity and innovation
	1 (1%)
	Medicaid service coordination is a must, to ensure our services are not abused, but also someone to answer too for these aganecys that take care of majority of medicaid recipirnts don't take advantage of them.. Cash and the medicaid dollar should receive equal treatment!
	1 (1%)
	I believe the trend for the individuals is to live as independent as possible. To the individuals in group homes that is not to live in a group home but in their own apartment. Then there is a need for at home res hab servcies. Families are not always agreeable about individuals leaving IRA's for their own apartments. Then there is the transportation to stores and recreational activities that comes into play.
	1 (1%)
	better trained staff. Better opportunites for work and earning a living, access to education for everyone.... individuals/staff/ families/ Visionary leadership that sees a future that is self determined and based on what the individuals wants for their own life..
	1 (1%)
	For children with disabilties, there needs to be a stronger connection and callobration between school districts and service providers.
	1 (1%)
	Higher rates for those service coordinators who have individuals seeking self-determination funding, allowing them to have a lower case load without burdening the agency and enabling them to provide more intensive services to those families. Or perhaps allowing for a variety of "rates" for different specialty service coordination providers (medical, self-determination, dual diagnosis) to allow an agency to offset the cost vs caseload requirements when they engage in service provision to more complex individuals and families. AND as above, the improved access to supports from all of the available providers regardless of funding source - true wrap around service model.
	1 (1%)
	Outpatient, family support, habilitation supports waiver, children's waiver, community supported living services, in-home resite, out-of-home respite, day treatment, residential treatment, and behavioral trainer services.
	1 (1%)
	Easily accessed parent/advocate training in these programs.
	1 (1%)
	Additional funding to support agencies who protect the health and safety of our vulnerable population.
	1 (1%)
	Communication, education, patience and experienced skilled workers More community involvement--less dependency on "facilities" to be responsible for the lives of the disabled. Change the language from "they" and "them" to us.
	1 (1%)
	continued consumer choice, more global budgeting, less regulations and above all else continued adequate federal Medicaid reimbursement/funding.
	1 (1%)
	More funding opportunities to enable agencies to provide neededassistance to these individuals
	2 (1%)
	New president, governor and NYC mayor. HELP We need to unite and advocate together across the state as we did years ago for the "Do the Right Thing" project, which resulted in NYS Cares I. We need to continue to work together to strengthen our system in NY.
	1 (1%)
	Continue to educate both people who work in the field as well as the developmentally disabled in order for us to better provide for them as well as for they being able to better provide for themselves.
	1 (1%)
	I am not as familiar as I should be with what the issues are. I would guess that higher pay and education expectations for caregivers who service adults living in group housing would be beneficial. More housing availability would help as well.
	1 (1%)
	Ensuring the consumers still have access to paid clinical services to maintain or improve status.
	1 (1%)
	Again, the need to keep in mind that a strong focus on each individual child and his/her family and individual needs is so important in helping these persons be successful, knowledgeable and achieve their goals.
	1 (1%)
	The workforce issues are and will continue to be an issue in terms of obtaining qualified staff to provide needed supports. Salaries for direct support workers needs to increase, and the positions become more valued.