If you have a child with a disability who is about to turn 18, there are a lot of factors you may need to take into account. This transition period requires a lot of careful planning. I have put together a guide to help you think through the steps your family will want to think through.
1. Understanding the Transition
The first is understanding what – exactly – will be impacted. If your child is on a degree track through highschool, the transition to adulthood may include losing school supports and their IEP team. Understanding what those supports are, how your child relies on them, and what will need to be replicated when no longer available is crucial. If they are on a non-degree track, school and IEP supports should still be available, often up to the age of 22. Knowing your path is an important part of building your plan.
2. Educational and Vocational Planning
Individualized Education Program (IEP) Review: As the student approaches graduation, review and update their IEP to reflect their post-secondary goals. This may include vocational training, higher education, or other career-oriented programs. If you have not already, expand the IEP team to include professionals that are prepared to help with the transition, including doing assessments to focus on what the next step could be. Include your child in the IEP meetings as well to get their input and buy-in: having their buy-in is imperative to long-term success.
Transition Services: Utilize transition services that focus on job training, life skills, and community integration. These services can provide valuable support in preparing for adulthood. If college is on the horizon, start speaking to the disability services at different schools and understand what is available, and how you access it. Accessing disability services in college is a much different path than in highschool: it’s not guaranteed to be available, and it’s not readily offered – the student must ask for it, and be prepared to be their own self advocate. Parental involvement can really help long-term success here – as well as outside coaching and support. Executive functioning skills are not fully developed for humans at age 18, and people with disabilities may struggle even more with executive functioning skills. Doing as much to prepare ahead of time to know your child’s needs and limits will help a successful transition to college.
3. Decision-making Supports
Guardianship, Power of Attorney, Supported Decision-making, and Microboards: At the age of 18, parents are no longer provided access to medical records, given the ability to make medical decisions for their child, they cannot enter into contracts on behalf of their child, or open accounts for them. Knowing what level of decision-making support your child will need – and making sure it is lined up – will help ensure the transition to adulthood goes smoothly. Each state has different guidelines on what is needed for power of attorney and guardianship, knowing these for your state – and working with the right professional to get it done – is important.
4. Healthcare
Healthcare Transition: Ensure a smooth transition from pediatric to adult healthcareservices. This includes finding adult healthcare providers who are experienced in treating individuals with special needs. This will also include dental care, and if your child will be on Medicaid in adulthood, ensuring their providers accept Medicaid is an important detail.
Healthcare Power of Attorney: your child may need help with medical decisionmaking. A medical directive will ensure that you still have access to their records, and will be included in medical decision-making conversations. There is a lot of conversation about power of attorney and if it should be used for people with disabilities – understanding the pros and cons of this tool, and how it applies to your family – is critically important. I recommend that every human have a medical directive in place, as we all may face a time where we need help with our medical decision-making. Know what is at stake and make the appropriate choice for your family.
5. Government Benefits
Know what’s needed: If your child has a lifelong disability and it is expected that they will need lifelong care and support, obtaining a social security disability evaluation is strongly recommended. Even if they can work now, getting them into the system with a disability evaluation prior to the age of 19 is highly recommended. It CAN be done later, but it is much more difficult – and makes obtaining the Disabled Adult Child benefit more difficult as well (more on that to come in a future blog post).
Get ready: make sure that your child is ready to apply. Gather their medical records, including diagnosis records, IEPs, psychological evaluations, behavioral assessments, and more. Then, make sure they are financially ready: if they have more than $2,000 in an account in their name, considering transferring the money to an ABLE account or a special needs trust. Consult a professional if you have questions about this process – applying and getting denied can set you back for years. State specific programs: Next, look at your state’s programs that are available, and how you apply. You may need to apply separately for Supplemental Security and Medicaid, and there may be a different process for Medicaid waivers as well. Know where and how to apply, and when – you do not want to apply until your child turns 18.
6. Independent Living and Community Integration
Housing Options: Explore housing options that promote independence while providing necessary support. This may include group homes, supported living arrangements, or independent living with community support. If your child has a Medicaid waiver, look into what options are available through the waiver. Each state calls programs differently – from community living waivers to adult foster care, navigating each system can be slightly different – while aiming to achieve the same outcomes.
Community Involvement: Encourage participation in community activities and social networks to foster a sense of belonging and inclusion. Know what is available through benefits available to your child, and what you may want to be pay for out of pocket.
7. Long-term Planning
Future Goals: Set long-term goals that align with the individual’s interests and abilities. Regularly review and adjust these goals to accommodate changing needs and aspirations. Person centered planning is important, and involving your child in the process is imperative. The right plan will be driven by their needs and wants, providing as much autonomy as possible. As one mom recently mentioned, while independence may not be possible, autonomy should and can be maximized. Make sure your team respects your child’s autonomy, and start practicing now with decisions inside your home.
Ongoing Support:
Continue meeting with your microboard, and if you do not have one, consider how you will build your child’s long-term support network.
A proactive approach to the transition to adulthood for your child will prevent many problems later, and set them up for success. You can do this – and you don’t have to do it alone. We are in this together!
If you are looking for additional support or resources, consider joining our Facebook group – Special Needs Planning with the All Needs Community.
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