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.

Southpoint Estate Planning is excited to host a special event at Reality Ministries on May 23, 2024 at 6:00pm. Jenna Hamill Flynn (LCSW) from the Autism Society of North Carolina will be joining us to explain the Innovations Waiver's Registry of Unmet Needs in the state of North Carolina. Participants will leave with a stronger understanding of the steps to take to be placed on the waitlist as well as what to expect in the process.

The NC Innovations Waiver is a Federally approved 1915 C Medicaid Home and Community-Based Services Waiver (HCBS Waiver) designed to meet the needs of Individuals with Intellectual or Development Disabilities (I/DD) who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting.

Because of their disability, a person receiving Supplemental Security Income (SSI) may not have worked long enough to qualify for Social Security Disability Insurance (SSDI) benefits on their own work record. Therefore, once they meet the government’s strict physical or mental disability requirements and fall under SSI’s income and asset caps, the SSI recipient might assume that they will never obtain SSDI benefits in the future.

However, this is not always the case. In fact, many SSI recipients who became disabled prior to turning 22 years old may begin to receive SSDI benefits when one of their parents retires, becomes disabled, or passes away.

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.

Among adults aged 18 and older in the United States, estimates suggest that about 125,000 have Down syndrome (DS). It remains the main genetic cause of intellectual disability that qualifies individuals automatically for Supplemental Security Income (SSI) and, in turn, Medicaid. Yet very limited research exists on how adults with DS use Medicaid compared with other groups.

Currently, individuals who acquired a severe disability prior to age 22 are eligible for Social Security Disability Insurance (SSDI) based on a parent’s work record.

However, if a young person with a disability then wishes to pursue employment opportunities as they transition into adulthood, they may put themselves as risk of losing another benefit, the Disabled Adult Child (DAC) benefit.

In June 2023, Sens. Ron Wyden (D-OR), Bill Cassidy (R-LA), and a group of fellow senators reintroduced a bipartisan bill, known as the Work Without Worry Act.

Designed to allow adults with serious, lifelong disabilities to work without becoming ineligible for certain benefits, the legislation could aid about 6,000 individuals with disabilities over the coming decade if it passes.

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.

Emotional support animals (ESAs) are pets prescribed by a licensed mental health professional for those with disabling mental illness. While emotional support animals are commonly cats and dogs, any animal can serve in this capacity, such as a bird, rabbit, or reptile. Caring for the animal benefits a patient’s mental health.

All participants in a survey by the Assistance Dog Center (TARSQ) and CertaPet reported that having an emotional support dog improved their quality of life. ESAs increased feelings of security, independence, and energy, reduced stress, and enhanced sleep. They provided motivation, structure, joy, and companionship and fostered social interactions. These animals also helped participants reduce panic attacks and handle work obligations.

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.

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.

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.

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.

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.

Lois Curtis – known as “L.C.” in a historic disability rights case — has died. She passed away from cancer at her home in November 2022 at age 55.

Curtis, who had intellectual and psychiatric impairments, was institutionalized from her teenage years into her early 20s. She and another plaintiff, Elaine Wilson, eventually went on to fight for their right to live in their community rather than being unnecessarily institutionalized.