Imagine not being able to marry or even live with the person you love. The recently released documentary Patrice: The Movie, now available on Hulu, addresses this emotionally challenging conundrum. Patrice Jetter and Garry Wickham are the main characters in this touching film. They have both lived with disabilities their whole lives and receive disability benefits from the government.

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 announcement about the cost-of-living adjustment (COLA) for 2024 is now out, and it’s good news for disability benefits recipients. Those who rely on Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) will soon see a 3.2 percent increase in their monthly payments.

1. Buy enough life insurance. A parent is irreplaceable, but someone will have to fill in if the worst happens. It may be siblings or other relatives. In all likelihood, that family will have to pay for at least some services the parent or parents had provided when able. If the estate is not large enough for this purpose, it can be made large enough through life insurance proceeds. Premiums for second-to-die insurance (which pays off only when the second of two parents passes away) can be surprisingly low.

2. Set up a trust. Any funds left for a child with special needs, whether from an estate or the proceeds of a life insurance policy, should be held in trust for his or her benefit. Leaving money for anyone with a special need jeopardizes public benefits. Many people with special needs cannot manage funds, especially large amounts. Some families disinherit children with special needs, relying on their siblings to care for them. This approach is fraught with potential problems. Siblings can be sued, get divorced, disagree on their responsibilities, or run off with the funds. It can also cause tax problems for the siblings. The best approach is a trust fund set aside for the child with special needs.

People with disabilities in the labor force face higher unemployment rates, work fewer hours, earn lower incomes, and accumulate less wealth than those without a disability. According to 2022 data, the unemployment rate for American workers with disabilities is twice that of people without disabilities.

Individuals with disabilities also can encounter several barriers when looking for employment. Workplaces can be inaccessible and lack assistive tools or technologies as well as systems, services, and policies to accommodate employees with disabilities. They may also experience stigma at work.

Autism spectrum disorder (ASD) affects children as they develop. People with autism have differences in the brain relating to behavior, communication, and learning, as well as how they interact with others.

ASD is marked by difficulty with social situations. Yet, autism exists on a spectrum and affects individuals in varying ways. While some with ASD are nonverbal, others have advanced conversation skills. Some on the spectrum need more extensive daily help and support than others.

New developments in technology could help diagnose children earlier and provide additional support.

The Senate and House have cleared the passage of a year-end $1.7 trillion appropriations bill that will affect people with disabilities on several fronts.

The bill, which runs more than 4,000 pages and includes a wide variety of legislation, heads to President Biden next for his signoff.

If you have a child with disabilities, it is crucial to set money aside for the child’s future. At the same time, you need to consider your child’s access to public benefit programs such as Medicaid and Supplemental Security Income (SSI), as well as the state and federal tax implications. The two major vehicles to accomplish these goals, ABLE accounts and special needs trusts (SNTs), each have their advantages and limitations. Using them in tandem may be the optimal strategy for your child with special needs.