Building an Estate Plan for Adult Children with Disabilities

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 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 for People With Disabilities

• Your home – It’s great if you can leave your residence to your child in a special needs trust. Just be sure the trust 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 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 attorney. 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.

Many US military personnel have experienced serious physical and mental health problems. A large percentage of these service members are unmarried and under 30. 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 secure 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

Create a realistic strategy to ensure your adult child’s safety and success when you are no longer alive Begin by creating a general framework with a special needs planning lawyer and then fill in the financial details.

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, 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 their ability to qualify 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

Special Needs Attorneys

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

• Guardianship
• Conservatorship
• Special Needs Trusts
• Advance Health Care Directive
• Durable Power of Attorney

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. Provide for your child’s future success by speaking to a local special needs attorney. With their expertise, you can begin your proactive planning.