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. Letter of Intent
2. Living Arrangements
3. Government Resources
4. Private Financial Resources
5. Legal Needs: Special Needs Planning Attorneys

Letter of Intent (LOI)

Although the Letter of Intent 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, and friends who all participate in your adult child’s success. In New York State, legislation was passed in 2022 formalizing Supported Decision-Making Agreements (SDMAs). These agreements are voluntary and are designed to protect the decision maker’s rights and autonomy. The decision maker is the one who chooses the supporters who will assist them. The SDMA is used to outline who is the supporter, what kind of support they can give, and what limitations there are on the supporter’s authority.

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, do not 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 is 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, although options are often limited. 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, our special needs attorneys can help you to 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 is wise to involve a special needs attorney. We 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 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 is important to consult an attorney who has experience with special needs planning. 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 with the special needs attorneys at Kommer Bave & Ciccone LLP. With our expertise, you can begin your proactive planning.

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