The Estate Planning Process for Individuals with Special Needs

Nima Ashtyani
September 1, 2022

Exactly what are special needs? Individuals with special needs are those who face learning difficulties, behavioral or emotional difficulties, or physical difficulties. For example, individuals with autism, ADHD, Asperger syndrome, Down syndrome, dyscalculia, dyslexia, deafness, blindness, and cystic fibrosis fall into the special needs category, as do cleft lips, missing limbs, and more. The US government combines this group into the overall classification of disability, and current US Census data estimates the US disabled population to be 12.7 percent or 41.1 million individuals.

Making plans that address your special needs child’s lifetime of physical and cognitive impairments requires careful thought and planning. When looking toward the future, consider their ability to make decisions and make the necessary resources available. You can provide for them financially, allowing them to live as independently as possible using specific legal arrangements for their protection. When you are no longer around or able to help, the foundation for continued care you set today will ensure your child has the best possible chance for a successful future.

Special Needs Planning

Achieving your planning goals begins with understanding the financial implications of your loved one’s situation. The top priority is typically providing for your special needs child’s financial security. Much of this security will come from government services like Social Security Disability Insurance (SSDI), Social Security Income (SSI), and Medicaid. Supplemental family funds in a special needs trust or a life insurance policy can enhance their financial future further. When financial resources or gifts are carefully added to the plan, they will not disrupt government eligibility qualifications. A special needs or disability attorney is familiar with maintaining all possible avenues of support through legal techniques.

Creating a Team

Beyond securing their financial future, as a family, you need to identify the special needs child’s support team. You might select a guardian (and backup guardian) to make medical or life decisions for an adult child if they are unable. If there is a special needs trust, you must appoint a trustee to oversee the trust. Having a trustee different from the named guardian is an excellent checks and balances system. If possible, involve your special needs child in the discussions and planning process. Many special needs individuals are capable and want to provide input about who they want and don’t want to be involved in their lives.

These discussions can be difficult for parents as they may feel no one will ever match their ability to provide their special needs child with adequate care as they age. Each family must work out issues and make compromises, keeping the child’s best interest in focus. Professional personal care assistance can relieve the principal care provider, usually the guardian, and give families extra flexibility. Some care options to consider include:

  • Family members – Many special needs individuals choose to remain with family members. Typically, the family best knows the child’s routines and preferences. However, this default arrangement often leaves family members as unpaid caregivers putting their earning potential and future at risk. Shared family responsibility and rotating caregiving may alleviate this problem yet may not be best for the special needs individual.
  • Personal care professionals – Known as PCAs, these caregivers are the main method of non-family care. Duties include organizational or housekeeping tasks, bathing, dressing, ventilator or catheter care, transportation, and more. Although a PCA can be hired through an agency, many families opt to hire and train individuals directly. In either case, proper vetting and qualifications are a must.
  • Community-based homes and supported living arrangements – Some special needs adults are capable of living in group homes that provide independence with support. Those care providers who live or work in these arrangements offer services ranging from medication assistance to decision making, even job applications for residents. This living arrangement is typically communal with shared activities, including meals and social groups.
  • Independent living arrangements – There are many instances where a special needs adult can live independently with the aid of a PCA whenever additional support is needed. Some individuals may only require a few hours of PCA care daily to help with morning routines or mealtime, while others have several PCAs providing 24-hour care in rotation. Sometimes there is an arrangement with a housemate or roommate to provide backup support in exchange for a break on rent.
  • Assistive technology – The digital age and the internet of things have given rise to many assistive devices providing independence options. Those special needs adults with severe mobility issues can use this technology to control their home environment, take and share their baseline medical readings, and use digital devices that access the internet.
  • Day programs – Young adults with special needs may attend public schools until they turn 21. In years after 21, some day programs provide similar continued education and structure. These educational services and programs help adults enhance their life skills while maintaining social bonds with a community of their peers.
  • Long-term care facilities – Current findings show that care specialists and special needs advocates regard institutional settings as the least preferable option. However, a residential facility may be the best option for some situations if there is limited access to other support types. The Association of University Centers on Disabilities (AUCD) finds evidence-based data that supports community and home living as the best practice for special needs or disabled individuals.

Letters of Intent

Create a letter of intent (LOI) to address family history, daily schedule, medical care, education, benefits received, possible employment, and a general overview of your child’s life to date. Also include employment hopes, residential social and religious environments, behavior management, foods (including any allergies), and your hopes for their future. You can also explain expectations for your special needs child’s final arrangements for funeral services and burial.

Some options for your special needs child’s future are only available with additional private funding. However, with the right planning, all children and adult children with special needs can qualify for appropriate life care. Discussing care options with the family and a special needs attorney or disability lawyer is the first step in creating the best plan possible for your special needs child. We hope you found this article helpful. Please contact our New Jersey office or call us at (201) 464-2040 to discuss your legal matters.

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I am an attorney and chose Nima to prepare our estate documents because he is knowledgeable, thorough, and prompt. In fact, Nima was ready to go over the documents he prepared well before my wife and I were. Nima knows what he is doing and gives matters the attention they deserve.
Alex Pisarevsky, Partner, Cohn Lifland Pearlman Herrmann & Knopf LLP

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