Parents of adult children with disabilities know that their child’s disability needs may change over the course of their lifetime. Planning for the future well-being of an adult child with disabilities is, therefore, a responsive, ongoing process.
The life expectancy of many adults with disabilities has increased over time. For example, according to research, life expectancy for adults with Down Syndrome rose from 25 in 1983 to 60 in 2020. Those with cerebral palsy, the most common motor disability of US children, may often live into their 50s.
The ever-increasing life expectancies of people with disabilities mean that comprehensive special needs planning requires short- and long-term planning. The following five elements are key to laying the foundation to ensure a successful support system for your adult child:
1. Vision
2. Living Arrangements
3. Government Resources
4. Private Financial Resources
5. Legal Needs: Special Needs Planning Attorneys
Vision
How do you envision your adult child’s life after you’re gone? As you define and refine your vision to the extent possible, you should involve your child in the process. It’s important to focus on the strengths and abilities of the adult child, not just the challenges of their disabilities. This involvement helps promote self-esteem and independence to the highest degree possible.
Letter of Intent (LOI)
Although this letter is not a legal document, it provides important information about your child’s routines, preferences, and wishes. The LOI can and should be extremely detailed, including comprehensive medical information. It also may identify caregivers, providers, and others in your child’s life who serve as part of their support system. Reviewing and updating the letter at least every two years or when significant changes occur is good practice.
Supported Decision-Making
If your adult child is capable and in charge of decision-making, selecting a team of trusted advisors is still important. This team may include family members, professionals, friends, and community services who all participate in your adult child’s success. The National Resource Center for Supported Decision-Making has information about the right to make choices by state.
Living Arrangements
Where your adult child will live depends on several factors, including their disability and available financial resources. If your child currently lives in your home, don’t wait until you can no longer provide care to have them move into and experience a new home. Moving can be a tough experience while you are alive but catastrophic when you are gone.
Housing for People With Disabilities
Government Resources
Creating an outline of the individuals, services, and organizations that have become your adult child’s support system and how they are financed makes your vision for your child a reality.
Public Assistance Programs
When navigating government assistance resources, it’s wise to involve a special needs professional. They can explain how to manage assets properly to preserve your child’s access to crucial government programs.
A person with developmental disabilities can often access the Supplemental Security Income (SSI) program. SSI guarantees a minimum income to qualifying low-income recipients. A representative payee can assist those individuals who are unable to manage their finances.
To be eligible for Medicaid benefits, the recipient must have limited income and assets. (The limitations apply to assets not protected by ABLE or Special Needs Trust accounts.) Medicaid covers a broad range of health care costs.
Maintaining eligibility standards and managing these benefits may be more than your adult child with disabilities can manage. You may consider identifying a reliable candidate to assist your child. It is also essential to create the structure that legally permits this designee to facilitate your child’s access to such programs.
Private Financial Resources
Create a realistic strategy to ensure your adult child’s safety and success when you are no longer able to provide care by creating a general framework with a special needs planning professional.
Financial resources may include life insurance policies and other investment strategies. For example, consider funding an Achieving a Better Life Experience (ABLE) account. ABLE accounts can help your child continue living a life of safety, purpose, and impact after you are gone.
Additionally, getting connected with a lawyer that specializes in special needs planning to assist in the creation of a special needs trust appropriate for your family’s financial situation and child’s needs is essential to planning. This trust type provides additional monies to your adult child without them losing their ability to qualify for government benefits. There are various special needs trust types, including:
Special Needs Attorneys
There are several legal tools that parents can use to create a lifelong plan for their adult child with disabilities, including:
It’s important to consult an attorney who has experience with disability law. They can help you determine the best option for your adult child’s future specific needs and situation.
Legal guidance from special needs attorneys is critical; missteps can jeopardize your child’s ability to qualify for crucial government benefits programs.
