Dori J. Dixon has been selected as the newest member of the Special Needs Alliance.

Established in 2002, the Special Needs Alliance is a national, non-profit collective of many of America’s leading disability and public benefits attorneys. Currently in 48 states, SNA members work to secure Medicaid and other public benefits for individuals with special needs. The SNA’s mission is to help enhance the quality of life for people with disabilities by coordinating private resources with public benefit programs through special needs planning and trusts.

How can you ensure that your special needs child will remain well cared for and secure once others assume the role of guardian or caregiver? While creating a financial plan and establishing a specialized trust are central to preparing for your child's future, special needs planners also advise families to write down their intentions and expectations in a document referred to as a Memorandum of Intent, also known as a "Letter of Intent."

Children with disabilities present a unique challenge for parents who are looking to engage in estate planning. For one, you will want to optimize your estate to provide assets for your child. At the same time, maintaining their enrollment in public benefits programs is no doubt going to be essential.

To ensure you meet both of these objectives requires careful planning. A special needs trust is an estate planning tool that can accomplish these and other goals you may have for your child.

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.

Although 26 percent of people in the United States have a disability, only 6 percent of housing meets basic accessibility requirements. Two in every five older adults experience a disability, and one in five adults are expected to be over 65 by 2030.

If you are an individual with a disability who holds an ABLE account, your annual contributions to this type of account generally must not exceed $17,000 a year, as of 2023. However, ABLE account owners who are employed can contribute their work income to this type of account beyond the typical $17,000 annual threshold until the end of 2025.

n 2022, the cost of raising a child in the U.S. to age 17 was roughly $17,000 per year. For families of children with disabilities, that estimate runs far higher.

The costs of such necessities as health interventions and behavioral therapies, assistive technology, medications, child care, and sensory-friendly items can mean parents raising a child with autism to adulthood will pay about $60,000 annually, according to nonprofit Autism Speaks. Depending on the severity of the child’s disability, those costs can easily escalate further.

Children with Autism Spectrum Disorder (ASD) who meet certain criteria outlined by the Social Security Administration (SSA) may be able to secure public benefits that can offset these costs to some degree.

Autism Spectrum Disorder (ASD) is a developmental disability that affects communication, social interaction, and behavior. As a spectrum disorder, ASD impacts individuals differently and to varying degrees. According to the Centers for Disease Control and Prevention, about one in 36 children have autism. Over a third of children with autism experience intellectual disabilities.

Many parents of children with autism worry about what could happen if they can no longer provide care and financial support. Improving financial literacy is essential for many with autism in gaining independence and preparing for adulthood.

Many parents and families planning for the care of their loved one with special needs will consider setting up a special needs trust. (Special needs trusts are also often referred to as supplemental needs trusts and SNTs). These trusts allow assets to be left to a disabled or chronically ill person without disqualifying them for certain benefits, such as Medicaid.

November will mark National Family Caregivers month. Studies show that looking after those with special needs exacts a toll on caregivers. This Thanksgiving season, shift your focus a little and remember that you must take care of yourself if you want to continue caring for others.

As the saying goes, “you can’t pour from an empty cup.” If you have been a caregiver for a loved one with a disability or chronic illness, ensure that you are healthy physically and mentally. Here are five tips that can help you prioritize self-care.

Many individuals engaging in estate planning opt to create a third-party special needs trust to provide for their loved one living with a disability. However, did you know that these trusts may have to pay taxes on any income generated from the trust assets and retained by the trust for future use? If the trust is a qualified disability trust (QDT), it can minimize unnecessary tax consequences.

Many individuals with disabilities want housing that offers them more integration in the community and a greater sense of independence than institutional settings. Yet they have been waiting since 2014 for federal officials to enforce the rules that such community-based housing services are supposed to meet. Early next year, the federal standards defining what qualifies as community housing will finally be imposed on states.