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Keys to Building an Estate Plan for Adult Children with Disabilities

Keys to Building an Estate Plan for Adult Children with Disabilities


How do you want to provide for your adult child with disabilities when you are no longer here? This is a question all parents caring for their adult children living with disabilities face and they know that their child's disability needs may change over the course of their life. For many, planning for their future well-being is a responsive, ongoing process.

Setting up comprehensive special needs planning requires short- and long-term planning. To get you started, here are a few key elements that can help create a successful support system:

1. Vision

How do you envision your adult child’s life after you’re gone? As you define and refine your vision, you may want to involve your child in the process. It’s important to focus on their strengths and abilities, not only the challenges associated with their disabilities. This involvement can also help to promote self-esteem and independence.

Letter of Intent (LOI)

Although this letter is not a legal document, it does provide 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. It’s good practice to review and update the letter periodically or when significant changes occur.

Supported Decision-Making

Even when 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 more information about how to make the right selection based on your state.

2. Living Arrangements

Where your adult child will live depends on several factors, including the type of disability they live with and available financial resources. 

Housing Options 

  • Your home – It’s great if you can leave your residence to your child in a Special Needs Trust (SNT). Confirm that the trust also contains enough money to cover ongoing property maintenance, taxes, and other housing 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.
  • Assisted living - If assisted living is a requirement, a special needs attorney or case manager can help identify options available in your area. 

3. Resources and Support

Creating a single document that contains the information of all the individuals (such as in-home caregivers), services (government or non-government), and any organizations that are a part of the support system your child relies on in their daily life can be helpful. It's also important to provide details on how these people or services are paid for, should that type of arrangement apply, as this can help keep your adult child's care continuous when you are no longer around to provide such guidance.

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, such as Supplemental Security Income (SSI), Medicaid, and Veterans Disability Compensation

4. Private Financial Resources

Working with a special needs planning attorney is valuable when creating an estate plan to secure your adult child’s future. They can help build a general outline, to which financial details may be added. 

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 attorney can create an SNT 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 SNT 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:

  • Guardianship
  • Conservatorship
  • SNTs
  • Advance Health Care Directive
  • Durable Power of Attorney

It is never easy to think of our own mortality but it is vital to start planning now to ensure your child is set up with the best possible situation when you are no longer here. Consult an attorney in your area who has extensive knowledge of SNTs and disability law. They can help you determine the best option for you and your family. 

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