I write this as a parent who has experienced the complex and often overwhelming process of transitioning a child with a disability into adult services. In sharing my personal insight, I hope to provide parents and caregivers with information to help you to avoid any missteps in working towards transitioning your own child.

Let me begin by explaining the MaineCare Home and Community Based Waiver Program, known as Section 21 and Section 29, which allows adults with developmental disabilities to forgo institutionalization in favor of supports that help them live within the community. Waivers are funded with two thirds federal dollars and one third state dollars and are managed by the Office of Aging and Disability Services (OADS) within DHHS. OADS also provides case management services. Section 21, the Comprehensive Waiver, provides the highest level of support through services like group homes and community supports for individuals who need more oversight. Section 29, the Support Waiver, provides services like in home supports and works supports for individuals who live with their families or on their own.

Unbeknownst to most parents, there is currently a significant waitlist for the MaineCare Wavier Program for adults in the state of Maine, which impacts what services and supports are available to their adult child. The waitlist for Section 21 is determined by the level of need based on health and safety. Of the three categories of need in Section 21, only those on Level 1 who are most acute have come off the waitlist. The waitlist for Section 29 is determined according to the date the person is found eligible, which is why it’s important to apply as soon as possible. Maine is not alone. While other states may use different terminology, nearly every state has waitlists for Medicaid Waivers.

It is important to figure out the best options for your child long before they need to transition out of school-based services at age 20. Transition planning is meant to facilitate the passage of a child with a disability from school to post-school activities, including post-secondary education, vocational education, independent living and community participation. Transition should be addressed in a child’s individualized Education Plan (IEP) at age 14. A child’s IEP team can determine if it is appropriate to address transition earlier. I feel that state information regarding the process of obtaining waivers is often left out of the equation. I believe some schools think that case management handles applying for waivers and some case managers think schools handle applying for waivers. In saying this, I’m not placing blame with either party, but the outcome can be that families are left without important information at a pivotal time in their child’s life.

Consider the following:

  • If your son or daughter has a mental health diagnosis, you may find they qualify for Section 17 MaineCare services as adults. There are Section 17 day programs available and most do not have a waitlist.
  • Considering the waitlists for Section 21 and Section 29, what will you do when your child finishes high school? Families can self-pay to have their son or daughter attend a day program while on a waitlist, but that is a costly proposition. The rate for a day program is roughly $21 per hour.
  • Can your family live on one income if a parent or caregiver has to stay home to care for your son or daughter? Our family decided to sell our home and downsize to make ends meet because I gave up my previous job to be home for our son who has autism.
  • What kinds of opportunities for meaningful participation in social and recreational activities as well as interests and hobbies are available for your adult child while they are on a waitlist?
  • Should you seek guardianship of your child? Once your child turns 18 years old, NO providers, doctors, businesses, etc. will discuss anything about them with you unless you are guardian or obtain their written permission. There are many different forms of guardianship available. The process really should be done before a child turns 18. It is possible to obtain guardianship after 18 years of age, but it is much harder.
  • Your adult child must have MaineCare to utilize case management and waiver programs like section 21 and 29. Make sure they apply if they don’t have MaineCare. If your child is under 18, they should apply for the Katie Beckett Program under MaineCare. This program is not based on parental income and assets but on the significance of the child’s disability. Once the child turns 18, they are automatically transferred over to regular MaineCare.
  • You may wish to have your adult child apply for Social Security Disability (SSI). If your son or daughter receives SSI, they will automatically qualify for MaineCare with NO yearly reviews required. SSI handles this review directly for you but this doesn’t mean you should assume it is being done and done correctly. If necessary, request to speak to a MaineCare supervisor or call your SSI caseworker.
  • Does your adult child want to work? This should be addressed in high school during transition planning. The school will set your child up with a vocational rehabilitation counselor through the Division of Vocational Rehabilitation (VR). A VR counselor will work with your child to evaluate their skills and interests and provide training if it’s needed. VR can provide 90 days of short-term job coaching. After 90 days, you would need Section 29 long-term job coaching services for which there are waitlists. It is important to note that Section 29 provides a maximum of 21.6 hours a week for an individual. This means, for instance, that if your son or daughter requires a job coach and attends a day program, these hours have to be split between the two.
  • If you would like your child to learn how to drive, and they have a disability which could impact their driving ability, it’s a good idea to talk to your child’s case manager to inquire about getting an assessment. If you receive a doctor’s note or assessment in support of your child obtaining their license, submit this to the drivers’ education school your child will attend. Full disclosure prior to obtaining a drivers’ license could help protect you and your child from potential legal issues in the case of an accident.
  • Ask your child’s case manager to set you up with a Benefits Counselor through Vocational Services at Maine Medical Center to discuss the impact of any earnings your child makes if they are on SSI.
  • Finally, ALL adult males MUST REGISTER for the draft when they turn 18 years of age. NO EXCEPTIONS. It’s federal law. If your disabled adult son is ever officially drafted, you can provide documentation at that time as to why he cannot serve in the military.

In conclusion, I hope that the information I have provided helps your family in the quest to begin the process of developing a long-term plan for your adult child who has an intellectual disability or autism. At G.E.A.R. Parent Network, we are all also parents who have parented a child with an emotional or behavioral health concern. As always, we are here to provide information and support to the best of our abilities.

You may find the Transition Toolkit, provided by Autism Speaks, to be helpful: https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit

Written in 2015 by, Cynthia Levasseur, Former Regional Parent Support Coordinator, G.E.A.R. Parent Network For support in Maine please contact the G.E.A.R. Parent Network by calling (800) 264-9224.