Scoop Essentials: Transition And The Road Ahead
(Updated: March 17, 2009 at 6:10 PM CT)
Recently we brought you Scoop Essentials: Transition, It’s A Brave New World, a conversation about preparing for adult life with transition specialist Mary Korpi in Long Island, N.Y.
Now, Mary answers your questions on everything from obtaining Supplemental Security Income benefits to preparing for the work world. And she tells you why you should stay in school as long as possible.
Advertisement - Continue Reading Below
How can people get services after they leave high school? Some people have cognitive disabilities that make it difficult for them to navigate the after high school route? What are they to do? How much does the Department of Rehabilitation really do? — Marlene Winn, 56, Chicago, Ill.
Mary Korpi: The Department of Rehabilitation is both federal and state funded so there will be different levels of support in different parts of the country. Nevertheless there are specific guidelines families can follow that will maximize a young adult’s access to services.
1. First, at age 18 apply for SSI from Social Security. At 18 only the young adult’s income is included when determining eligibility so families need to be sure to research the income guidelines and, if needed, set up a “Supplemental Needs Trust” if the individual has too many assets. A lawyer who is versed in elder care law is most likely familiar with this type of trust but get referrals from local adult service agencies that deal with these issues regularly.
2. In many states once the young adult gets SSI, they will automatically get Medicaid. However, in Illinois you must apply for Medicaid separately so you will want to do that as well. You need to indicate that you want full coverage Medicaid, not just for medical needs. In many cases Medicaid will pay for adult services when an eligible young adult leaves school.
3. As soon as the young adult gets Medicaid, apply for a service coordinator through the Office of Developmental Disabilities in your state. Service coordinators are the navigators of adult programming for families and people with disabilities.
4. Finally, do not leave school before you must. If you have not completed the requirements for graduation, you are entitled to stay in school until the year you turn 21! For all the struggles you may face within the school system, school services are mandated by law. Adult programs require meeting eligibility requirements, which often makes services far less comprehensive and user friendly.
Specific information for your state, Illinois, can be obtained here. I hope this information helps.
Do you have specific strategies for working with students with multiple disabilities, especially those without formal language? Have you ever facilitated or encouraged a Person-Centered Planning process? — Nicole Bruce, 31
Mary Korpi: When working with students with multiple disabilities it is essential to develop a communication system. The most basic communication system I have ever worked with involved pairing objects that represented specific activities in the student’s routine. The objects were laid out each day when the student arrived at school in a communication box (shoe boxes that are stapled together or a plastic bin that is divided). Each section represents the next activity in the day. The matching objects were also attached to the door of each new location and/or handed to the student at the beginning of each new activity. I have used this type of system with adults who were deaf/blind and those who are developmentally disabled.
In my experience, when the student is able to understand and even anticipate daily activities, the need for acting out behavior is often greatly reduced. Communication systems give students a greater sense of control over their environment thereby decreasing frustration.
I have had the opportunity to facilitate many modified Person-Centered Planning meetings. In my current position as a transition coordinator we incorporate Person Centered Planning into every transition meeting we hold for our students before they exit school. We invite the student and their family and the entire school team as well as the service coordinator, the school district representative. We use mapping and validate everyone’s input throughout the meeting. This tool has become a wonderful way for our students, their families and the team to come together and focus on what we need to work on in order to facilitate a smooth transition to adult life.
This is a modification of the true PCP process in which a support group is gathered and re-convened periodically throughout a person’s life.
In your experience, which common transition practices and activities are the biggest waste of time? — Mike Shields, 63
Mary Korpi: I think that doing Level I assessments — these are student, parent and teacher forms — annually is a waste of time. I think these are best performed when a child enters the secondary school system and again halfway through high school, either at 16 or 18 years of age, and then again at the beginning of the final year of school.
Filling out these forms every year becomes a mere formality when little changes from year to year. Spacing out the requirements may help people really stop and reflect on what progress is being made and what is still left to be accomplished.
When will my son be eligible for disability benefits as an adult? My son Mark is 16, has autism and lives with his parents. He hardly talks. What age does Mark go from school to somewhere else? Is there vocational training in culinary work, as he likes to make pizza? Look forward to hearing from you. — Margo Pastirchak, Port Jefferson Station, N.Y.
Mary Korpi: The month your son turns 18 you should contact the local Social Security Administration office and set up a meeting. Your son’s eligibility for SSI will be based on his ability to become self-supporting and his assets. Please research the local requirements prior to contacting Social Security by checking out SSA.gov and/or seeking the assistance of your local Independent Living Center.
If your son qualifies, he will receive a monthly SSI check as well as Medicaid benefits. Medicaid is the primary and often the only method to pay for the adult services and supports your son will need when he exits the school system the year he turns 21 or sooner if he completes the requirements for a regular high school diploma as defined by your state.
Finally, the best way to explore Mark’s potential interests and possibility for vocational training is for him to participate in a Level II Vocational Evaluation. This is a one to three day testing experience that your school district can provide. It will explore Mark’s aptitudes, interests and abilities to perform competitive employment. And, if he participates in a life skills type of school experience, he can participate in volunteer internships out in the community which will further his understanding of the world of work. Once he leaves school, your son will need to skills that an employer is willing to pay for — speed, accuracy and the ability to manage his own behavior. He may be eligible for on the job training with a job coach. A job coach is a trained employee of a rehab agency or a school who will assist your son as he learns the skills, expectations and nuances of a new job.
I have a 30-year-old schizophrenic daughter who receives SSI. Can I rent her my condo at the market rate to live in without her losing her benefits? It’s the only way I can afford for her to live there. Thanks for your help. — Laurie, 55, Miami, Fla.
Mary Korpi: Actually you should have your daughter sign a lease with you for the fair market value of renting the condo even if this amount is more than her SSI check. SSI is supposed to pay for her room and board. Entering into a lease agreement with your daughter may in fact help to increase the amount of SSI she gets monthly. You will need to inform Social Security of this change in order to initiate the increase.
This article has been revised to reflect the following correction: A previous version of this story provided incorrect information about applying for Medicaid benefits. In many states, individuals can apply for Supplemental Security Income and Medicaid using the same form and qualify for both programs based on the same criteria. But some states require separate applications and may determine eligibility for the programs based on different criteria.