This month, YAI Network professional Jennifer Shaoul presents the second of two parts on how to prepare your loved one for the transition into adulthood.  In these two parts, many different areas needed to achieve independence and adult living skills are addressed.  In part two, overviews are given of guardianship, future care and benefits, living independently and in a residence, and day services and employment training.

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 to adult services, however, goes beyond the need for appropriate day time activities. There are some equally important transitional steps, which unfortunately are frequently overlooked.

Benefits, Guardianship and Future Care Planning

As individuals with autism reach adulthood, they can be eligible for Supplemental Security Income 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.

When any child turns 18, parents no longer have legal guardianship. For many high-functioning and independent individuals, 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 always 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 to understand and prepare for this process.

Independent Living and Residential Life

Some individuals with autism will require full-time support to live in the community, while others will require very little support. There exists a broad continuum of options, 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 and build up the experience gradually. 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.

Independent Living Skills
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.
There are certain skills that all people with developmental disabilities will need 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 skills.

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 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 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.  

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.