Transitions for Youth with Down Syndrome: Adult Healthcare and Employment

John and Alexa before their high school prom. We are all constantly transitioning throughout different stages of our lives. These transitions often come with conflicting feelings of excitement and stress.

Taking the time to prepare and plan is the best way to manage the stress that can accompany any major life transition. For individuals with Down syndrome, it is important to plan for the transition to life after high school as early as possible.

One thing to remember as you and your child prepare for this time of change: the transition process is a series of steps, not just a single transaction.

As you go through these steps, encourage your loved one with Down syndrome to learn to do as much on their own as possible.

As you navigate through the journey, consider these steps:

• Learn about the process: Learning as much as you can in advance can help you and your child prepare for what to expect during a time of transition
• Commit to open dialogue and discussion: Be honest about your concerns and ask questions, and encourage your child to do the same
• Locate resources: Contact your Office/Division of Vocational Rehabilitation and Office/Division of Developmental Programs to make sure you are aware of all the resources (like waivers) available to you and your child
  • Social Security: If your child had Supplemental Security Income before age 18, you and your child still need to verify eligibility. This can be done 3 months before turning 18. Your child will move to (or should apply for) Disability for Adults at 18. 
• Do your homework: Make sure you have received the proper evaluations and documentation your child may need to find employment or transition their healthcare (i.e. neuropsychological evaluations)
• Make connections: Connect with relevant agencies, doctors, etc. who will be part of you or your child’s adult life and start those relationships

In addition to these general tips, there are a few key areas especially important for individuals with Down syndrome to plan for when transitioning to life after high school.

Taking charge of healthcare

The transition from pediatric specialists to adult care providers should begin as children enter adolescence and be completed when they are in their early 20s. If you need assistance finding a doctor that can provide adult care, ask your pediatric providers or any community programs/agencies you trust.

As your child transitions from pediatric to adult providers, there are a few things you can do to empower them to become an active participant in their care.

• Have them spend time alone with healthcare provider(s): This gives them the chance to ask questions and interact one-on-one. Parents can start and/or end the visit, but giving your child time alone with their doctor is important to building self-confidence.
• Encourage independence: Have your child call to make their own appointments, refill prescriptions, and request referrals. Making them part of the process prepares them to take a more active role in their own care.
• Educate and inform: Create a document with all important health information — medical history, doctors’ names and contact information, prescriptions, etc. With the help of medical teams, explain to your child what their healthcare condition may bring in the future so they feel prepared. (Consider a CHOP Care Binder)
• Privacy!!! Make sure your child knows about their right to control personal healthcare information (HIPAA).

Challenges to the healthcare transition process

Know that challenges during your child’s transition from pediatric to adult medical care are to be expected. Planning for these challenges can help you deal with them as they arise. Here are some things to prepare for:

• Changes in state and federal health care plans — such as moving from Medicaid to Medicare — are sometimes not voluntary.
• Managed Care Organizations through Medicaid may not pay for a pediatrician after 18, requiring you to change care to an adult provider. In PA, by working with your Medicaid MCO, your Special Needs Unit can help you arrange visits with more than one adult provider so you can decide who is best for your child. This is called the OPS Memo.
• Understanding insurance: What kind of insurance will your child have, and what services will be covered? For example, Medicaid eligibility changes at age 18, so find out if your child is eligible to get or stay on Medicaid and for how long. Also research other insurance options, such as parents’ insurance (until age 26); employer insurance; school insurance; insurance marketplace.
• Expectations of care received are different in the adult world. The team approach to meeting your and your child’s needs available at CHOP’s T21 Program is rarely available in adult medicine, so be prepared to communicate your expectations and advocate for yourself or your child to receive the care you need.

Supported employment and vocational training programs

Youth with Down syndrome need to begin planning for work after graduation through the IEP process beginning at age 14. There are many vocational options to learn about and choose from.

“Supported employment” is when your child works and receives support services from a job coach. The job coach accompanies your child to the workplace to help them learn the essential job skills and prepare them to work independently.

The job coach spends more time with your child at first, and moves toward the goal of fading and providing support on an as-needed basis to assist in training for new assignments.

Watch the CHOP Career Path video “Workplace Training for Young Adults with Disabilities” to learn more.

Transition to adulthood consultation

Do you need to discuss your teen’s transition to adult life? Please talk to your provider at your next Trisomy 21 Program appointment to discuss your transition needs and find out what resources are available to help!

Topics include:

• From Pediatric to Adult Medical Care: The transition from pediatric specialists to adult care providers should begin as children enter adolescence and be completed when they are in their early 20s. These transition tips are designed to help young adults with intellectual challenges as they make this important step towards leading happy, healthy adult lives.
• Beyond High School Graduation: Planning for adult life should begin well before high school graduation. Here are 20 transition tips to help plan for a fulfilling life after graduation.
• Planning for Education and Training after High School: There are many opportunities for young adults to enhance academic, vocational, social and self-advocacy skills after high school. Post-secondary education and training are smart ways to build independence, get ahead in the job market and earn more money. These tips will help!
• Get Ready. Get Set. Let’s Go to Work!: A job boosts confidence, provides structure and spending money, and enhances support networks. Finding the right job can be hard. Here are some tips that can help.

Contact trisomy21@email.chop.edu to schedule a visit or a phone call with the T21 social worker to discuss your child’s transition to adulthood.