When people with autism and other developmental disabilities, their families and professionals discuss “transition planning,” the focus is generally on day programs, supported employment, advanced education or competitive employment. The transition from Department of Education services upon graduation to adult services, however, goes beyond the need for appropriate day time activities. There are some equally important steps, which unfortunately are frequently delayed or completely overlooked, to ensure a successful transition to adulthood.
Looking at this limited list may seem daunting to a parent embarking on this journey, but rest assured, there are resources available to assist you. Together, you and your family member can determine priorities that need to be addressed in a timely fashion.
Explore Eligibility for Services Through the Office of People with Developmental Disabilities
Families of individuals with Autism Spectrum Disorders (ASDs) often bypass this step prior to transition because they think their child wouldn’t be eligible or appropriate to receive services. They may prefer to focus on their child’s strengths or fear that eligibility may hold them back from other opportunities. Establishing eligibility with the New York State Office of People with Developmental Disabilities (OPWDD), or your state’s Office of Developmental Disabilities, even though you may never need or use these services, could be considered insurance for your family member’s future, while you pursue other avenues of support. These services may help you achieve goals through individual support and training for your family member and through support for you as a parent.
The earlier that one establishes eligibility within the OPWDD system, the earlier one can access services and supports that can help an individual be even more successful as they age. Some families don’t realize that an individual can have Asperger’s Syndrome or high functioning autism and still be eligible for services if the person has difficulty functioning in his or her environment. If the individual with the disability has not been identified to OPWDD prior to age 22, it’s more difficult to prove that the individual is eligible for services, though it can be done. It’s helpful to have a knowledgeable and experienced professional in the field of developmental disabilities (DD) to help you prepare your packet for eligibility.
You can get a taste of the array of services available for people with DD in by obtaining a Family Support Directory for your county from your local New York State Developmental Disabilities Service Office (DDSO). Visit www.omr.state.ny.us/document/hp_contacts.jsp to find your local office: DDSOs may also have other directories or lists available, e.g. day service, clinic, residential.
Don’t be disappointed if you’re family member with autism doesn’t obtain eligibility. He or she may still need supports but generally will have less severe needs than others with DD. There are sometimes other funding streams or private pay options for certain necessary services.
Health Care: Transition from Pediatrics to Adult Medicine and More
Unfortunately, many families wait a bit too long to make this transition. It’s hard to leave a trusted pediatrician who has been very patient with your family member, but unless that practitioner has expertise in adult medicine, you are doing your family member a disservice. Pediatricians do not regularly manage or treat adult health care issues and their offices are generally not equipped to treat people of all ages. There are many doctors available in the New York metropolitan area that have an expertise in treating adults with ASDs.
Young women with disabilities should see a gynecologist for recommended check-ups. Whether or not these women are sexually active, they will need breast and pelvic exams and pap smears for preventive care.
Some individuals, especially those with ASDs are particularly sensitive to dentistry, gynecology and blood work. Do not avoid treatment! Lack of care often leads to much more intensive challenges later on. Work with clinicians and health care practices that are familiar with and utilize desensitization techniques to overcome sensitivity to treatment and fear.
Benefits, Guardianship and Future Care Planning
As individuals with autism reach adulthood, they can be eligible for Supplemental Security Income (SSI) and Medicaid, even if they still live at home with their families. Medicaid funds many supports and services that may be very beneficial to you and your family member.
While many parents don’t realize this, when their son or daughter turns 18, parents no longer have legal guardianship. For many individuals, especially those who are more independent, this won’t make a difference. But for individuals who require more support and who cannot manage themselves or their finances, families should obtain legal guardianship. There are supports available to assist with this process and a lawyer is not required.
If your family member will require public benefits such as Medicaid to support necessary services for the foreseeable future, it’s important to ensure that any inherited money or current assets be secured in a Special Needs Trust. You will need specialized legal services to create this trust. We recommend downloading the Developmental Disabilities Planning Council’s Planning for your Future Guide (www.ddpc.state.ny.us/publications/childcare_education/planning_for_the_future_2006.pdf) to understand and prepare for all aspects of your child’s future.
Socialization
Having friendships is an important part of leading a full and satisfying life. People with ASDs often have trouble with making and keeping friends. While some daytime programs can help facilitate this, those in work settings often find navigating relationships especially difficult. There are opportunities for social skills training available and also programs both within and outside the OPWDD service system that provide opportunities for individuals to meet and form friendships.
Many people with disabilities have an interest in dating and sexuality. It is important for families and professionals to gauge an individual’s interest and activity level and make sure they have the skills and knowledge to make appropriate and safe decisions. Unfortunately, some individuals engage in what’s deemed inappropriate behavior simply because they don’t have access to socially appropriate outlets.
Behavior
Behaviors that were tolerated or even thought to be cute when your family member was younger may prove detrimental and even dangerous as he or she grows older. These behaviors may limit the programs available to them and/or limit potential friendships and relationships. Identifying the most debilitating behaviors and working with an expert on developing a behavior plan to eliminate maladaptive behavior and facilitate adaptive behavior is critical. The “one-to-one paraprofessional” that you fought for in the Department of Education is not generally available as an option in adult programming.
Independent Living and Residential Life
Some individuals with autism will require full-time support to live in the community and some will require very little support. There is a broad continuum of options that exists, but the waiting list for residential opportunities is daunting. You may be expecting me to say, “Get on the waiting list right away.” I’m not. OPWDD and most agencies don’t want you on the waiting list until the family and individual in question are really ready for placement. The important thing, at this early stage, is to prepare your family member for community living.
Overnight Stays – Make sure your family member spends nights away from home. It’s an important rite of passage and there are many ways to accomplish this. The first time away from home should be positive, planned, and brief. Don’t wait for an emergency. Have the individual spend the night at a relative’s or friend’s home. Use OPWDD-funded overnight respite programs. There is availability throughout New York City and people with DD can start with just a night visit or a weekend. And of course, sleep away camp is a terrific and fun option, but usually requires a longer commitment. You may have to build up to it. This separation is particularly difficult for parents. The person with the disability, in most cases, adapts pretty quickly. If not, all the more reason to keep trying under controlled and positive circumstances. Then, in an emergency, you have options and your child has skills and experience. It’s an important first step.
Independent Living Skills – I once read an article in The New York Times about a freshman at a prestigious college. She said she fully expected that the hardest part of college life would be the schoolwork. It wasn’t. She wasn’t prepared to deal with living with others or with budgeting to make sure she had money for food at the end of the week. At home, if the toilet paper was running out, a new roll magically appeared. In short, she was not prepared to manage her life independently.
We all struggle with aspects of independent living but through trial and error, we learn what we need to do to manage successfully. People with developmental disabilities are no different. We can help them become successful if we prepare them. They will need skills regardless of the level of support they will ultimately require. Through individual or group training programs, services are available to support your family member learn concrete skills like budgeting, food preparation, and doing the laundry, as well as more abstract skills like sharing with and accommodating a roommate and identifying and responding to emergencies.
Travel Training – Travel training is an integral part of independence. When a person is travel trained for a fixed route or for general travel, the door opens to an array of social and work opportunities. In fact, most employment training programs require travel training skill. Start young with basic skills like finding a room within a building, graduate to crossing a street safely, then train on navigating the local neighborhood. Some may never reach the ultimate goal of using public transportation independently, but each step allows for more freedom and opportunity. Explore the New York City District 75 Travel Training Program within the Department of Education (DOE) before a child graduates. There is a strong curriculum and success will prove useful for future program placement. You do not need to be a student of District 75 to avail yourself of this program, though you do need to be a DOE student with a disability.
Day Service/ Employment Programming Is Important Too!
This is the main focus of most transition planning and a very important part of an individual’s future. Ignore labels. Just because you visited a one day habilitation program and didn’t like it doesn’t mean that this service won’t be a good fit for your family member. These programs all have distinct personalities or cultures based on the age, background and functioning level of the individuals served, their location, and the activities they engage in. Take time to visit a variety of programs. Ask questions. See how your family member seems to fit with the other attendees. Do the activities seem to be appropriate and match your family member’s interests? Do people in the program look engaged and happy? Are staff appropriately interacting with the attendees and do they seem to enjoy their jobs? The same goes for employment programs or any other type of service you are considering for your family member.
Case Management: To Have or Have Not
You do not need Medicaid to have a case manager, though most are funded through Medicaid and obtained via the OPWDD system. Some families expect that a case manager or Medicaid Service Coordinator (MSC) will take care of obtaining all these services for them. It’s important to understand that the role of the MSC is currently evolving. And while many MSCs are extremely knowledgeable and can be a great resource, the increased demand for the service and the turnover rate in recent years means that there are a large number of MSCs that may be bright and motivated but not necessarily knowledgeable and experienced. The service system is complicated and it takes some time to fully understand it and gain expertise. If you get a very experienced case manager, consider yourself very lucky. Your best approach is to ask these questions: Is he/she bright and motivated? What kind of training will the agency provide? Does the supervisor have a lot of knowledge and experience? If the answer is no to any of these questions, ask for another case manager or try another agency. If the person you get is willing to do research with and for you, he or she can be a real asset.
Help is Available!
Don’t be discouraged. Yes, there is a lot to do and a lot to think about, but there is help available. And some things are more urgent than others depending on your family member’s abilities and needs. Feel free to call YAI LINK at (212) 273-6182 and an experienced and knowledgeable Intake Specialist will provide you with information and resources to help you access the supports you need for your family member. LINK makes referrals both within and outside of the YAI Network and keeps a vacancy database to help people get connected to agencies that have availability.
Jennifer Shaoul is the Senior Coordinator of Intake at YAI LINK, the intake, information and referral unit at the YAI Network.
