Contributed by Elaine Towle, mom to James (40, living with PWS) and Advocacy Specialist for PWSA | USA
The transition to adulthood looks different for all families with a loved one living with Prader-Willi Syndrome. But the first thing to think about is when to start planning for this transition, and that really should happen way before the traditional start of adulthood at 18 or 21. I remember conversations about “what’s next” in IEP meetings when my son was a junior or senior in high school – I have now come to believe that those discussions should start much sooner, probably during their first high school year. Transition planning should become part of your child’s Individualized Education Program (IEP) when they enter high school. Get everyone – especially you and your child – to start thinking about what comes next: what happens after high school, whether that is at 18 or 21.
Hopefully, your IEP team will start making suggestions for post-high-school activities, such as vocational training, daily living skills, and self-advocacy. And they will strive to build a school day that focuses on these areas. Be open to suggestions. I remember my son’s team talking about Vocational Rehab services when he was a junior or early senior. I did not accept those services at that time and have regretted it. My suggestion is to listen and be open to all suggestions from the team. Talk about it as a family, with your loved one, and try things out. It may take a while to find the right program, the right fit. And you may have to get a little creative, as so many PWS families have, mostly because of the food issues.
Turning 18 is a critical point for our kids, with two big issues to think about. One is the issue of guardianship, and every state handles this process differently. Start researching in your state at least a couple of years before you need it. Keep in mind that when your child turns 18, without guardianship you will no longer have access to medical records or school records. Your child will be able to spend any money they have, and sometimes money they don’t have, using your credit card, without your approval. Many, probably most, families with children with PWS choose to become guardians. Some families take a different route and perhaps just have a Power of Attorney that they can use if needed. There is a lot to think about in this area. Start early, you’ll be glad you did.
While there are a LOT more things to think about when your child is turning 18, I will end with just one more, and that is Social Security or SSI (Supplemental Security Income). If you have tried to get Social Security when your child was young, you will know that qualification is based on the parent’s income. Many people don’t qualify for Social Security benefits for their child because of this. But when your child turns 18, Social Security benefits are based on disability and financial need and only use the child’s income for that determination. You will need to provide information about your child’s health and disability. You should provide some scientific/professional information about Prader-Willi Syndrome, from your medical providers or another expert in PWS. PWSA | USA can provide this information as well, if needed.
Many people report being denied the first time they apply for SSI. Appeal, appeal, appeal!! When my son was denied, we were able to find a lawyer – even in a small rural state – who specialized in these appeals, charged a very reasonable rate based on back benefits which accrue from the time of original application, and won our case.
There are certainly a lot more things to think about when planning the transition to adulthood for our loved ones with PWS. Where will they live? Will they manage their own money? If not, who will? Who will care for them, now and in the future? What are our options? Sharing experiences is a great learning tool for all of us. Please share your experiences with this transition time so we can learn from you as well. Email communications@pwsausa.org.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.