Building a Support System for Adult Children with Disabilities

There are increasing numbers of adults with disabilities in the US, and parents planning for an adult child’s future well-being is a responsive, ongoing process as their disability needs may change. A Journal of the American Medical Association reports the life expectancy of adults with Down Syndrome has increased from 25 in 1983 to 60 in 2020. The same study cites that those with cerebral palsy, the most common motor disability of US children, may often live into their 50s.

The ever-increasing life expectancies of adults with disabilities mean that comprehensive special needs planning requires short and long-term planning to lay the foundation of five key elements to ensure a successful support system:

1. Vision
2. Living Accommodation
3. Government Resources
4. Private Financial Resources
5. Legal Needs

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 key instructions and information about your child’s routines, preferences, and wishes. The LOI can and should be extremely detailed, including identifying caregivers, medical information and providers, and other individuals in their lives who may be a good fit to care for or support your child. 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 Accommodation

Where your adult child will live depends on several factors, including their disability type and available financial resources. If your child currently lives in your home, don’t wait until you die 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 Options

• Your home – It’s great if you can leave your residence to your child in a special needs trust as long as it also contains enough money to cover ongoing property maintenance, taxes, and other costs.
• Another home – You might purchase a townhouse or condo for your child and hold the property in a special needs trust.
• Section 8 vouchers – This federal program provides housing in the community to low-income people; however, wait lists can be long.
• Group homes – Adults with disabilities can use private money or Medicaid payments to live in a group home. In some cases, this living situation also has counselors and other staff that can help residents live as independently as possible.
• If assisted living is a requirement, a special needs attorney can help identify options.

Government Resources

Creating a schedule 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. You can be creative, and pair speech, physical, and occupational therapists, as your child’s abilities develop more fully. Much of your child’s resources throughout adult life will depend on the continuation of government programs that provide the support and services they need.

Government Assistance Programs

It’s wise to involve a special needs attorney to explain how to properly manage these resources to preserve your child’s access to government programs.

A person with developmental disabilities can often access the Supplemental Security Income (SSI) program, which 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 a limited income and assets (assets not protected by ABLE or Special Needs Trust accounts) and 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. Identifying a reliable candidate and creating the structure that legally permits them to facilitate these programs is crucial to your child’s future well-being.

Many US military personnel have experienced serious physical and mental health problems since serving in Iraq and Afghanistan. A large percentage of these service members are unmarried and under thirty. For parents of veterans with disabilities, look into the Veterans Disability Compensation program.

There is also a benefits program for veterans with permanent disabilities, which is needs-based. The Veterans Disability Pension has eligibility requirements based on your adult child’s assets and income. A veterans specialist or disability attorney can create a special needs trust to ensure your adult child can qualify.

Many other government programs are available to help your adult child with disabilities have a successful future. A special needs attorney can explain more about discrimination protections outlined in the Americans with Disabilities Act (ADA), the Affordable Care Act (ACA), the Ticket to Work Program, and more.

Private Financial Resources

Parents of children with special needs have additional planning requirements to ensure the safety and success of their child’s life when they are no longer alive to oversee that child’s well-being. Creating a realistic strategy is key to success. Begin with creating a general framework with a special needs lawyer and then fill in the financial details. Financial resources may include life insurance policies and other investment strategies, such as funding an Achieving a Better Life Experience (ABLE) account. The cash flow these accounts create will allow your adult child to continue living a life of safety, purpose, and impact after you are gone.

Additionally, your lawyer can create a special needs trust appropriate for your family’s financial situation and child’s needs. This trust type provides additional monies to your adult child without them losing eligibility for government benefits. There are various special needs trust types, including:

• Third-Party Special or Supplemental Needs Trust (SNT)
• First-Party Special Needs Trust or Self-Settled SNT
• Pooled Special Needs Trusts

Legal Needs

There are several legal tools that parents can use to create a lifelong plan for their adult child with disabilities, including: