Planning Guide: Year-by-year

WHAT TO DO AND WHEN TO DO IT

Before Age 14:

• Begin transition planning through the IEP process. An IEP must include transition-planning services starting at age 16, but the process should ideally begin at age 14.
• Find out about diploma types and their requirements and discuss the options with your child and the IEP team.
• Talk to your child about puberty and sexuality.

Before Age 16:

• Begin thinking about long-term housing because waiting lists can be several years long, consider adding your child’s name to the waiting list for residential programs. That will give you more options later.
• Make sure your child is receiving WorkAbility and life skills training as part of their transition plan.
• Learn about the admission requirements and funding options for any college or vocational training program your child is interested in.
• Begin talking with medical providers about the transition to doctors and specialists treating adults. If your child has complex medical issues, you will want to begin finding new medical providers now.
• Make sure your child has an understanding of any chronic health problems he/she has and how to manage them.

Before Age 18:

• Organize your child’s medical records and other documents.
• Find out if there is an age cutoff for any of the therapies your child receives and, if so, get recommendations for providers working with adults.
• Apply for SSI.
• Apply or reapply for Medicaid.
• Find adult medical providers to replace your pediatrician and pediatric specialists.
• Get legal advice about conservatorship and guardianship.
• Speak with your health insurance agent about medical coverage for your child after s/he turns 18.
• Check with Durable Medical Equipment (DME) vendors and home care agencies to see if there are age cutoffs and, if so, what agencies can continue to provide the necessary care.
• If appropriate, have discussions with family about advanced directives, including Allow Natural Death/Do Not Resuscitate (AND/DNR) orders.
• If you have a daughter, arrange for her to have a gynecological examination with a gynecologist who understands her disability.
• If you have a son, he must register with Selective Service. He may register at the post office or online at www.sss.gov.
• Help your child register to vote.
• Determine whether or not your child will need a Special Needs Trust (SNT) or other financial plan.

Before Age 21:

• Take advantage of IDEA-funded special education services that run through age 21, particularly transition services.

Before Age 26:

• Determine whether your child will continue to be covered through your health insurance policy after they turn 26, and if not, what insurance they will need.