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Planning an Estate for a Child or Adult With Special Needs

What are special needs? Special needs is a specific disability type requiring focused attention on education for those with learning difficulties, behavioral or emotional problems, or physical disabilities.

How are special needs defined? The term special needs refers to those with learning difficulties, behavioral or emotional problems, or physical disabilities requiring focused attention and care. The US government combines this group into the overall classification of disability, and current US Census data estimates the US population of individuals with disabilities to be 12.7 percent or 41.1 million individuals.

Individuals with special needs may have:

  • Autism, ADHD
  • Asperger syndrome
  • Down syndrome
  • Dyscalculia
  • Dyslexia
  • Deafness
  • Blindness
  • Cystic fibrosis
  • Cleft palates
  • Missing limbs
  • And more

Special Needs Planning

Special needs planning addresses your child’s lifetime of physical and cognitive impairments and requires careful thought. A special needs attorney can help you think about the future and your loved one’s ability to make decisions before determining the resources that must be made available. Beyond providing for them financially, they should live as independently as possible. Specific legal arrangements are designed for their protection when you are no longer around or able to help. The foundation for continued care you set today ensures your child has the best possible chance for a successful future.

Preserving Government Benefits

Achieving your planning goals means understanding the financial implications of your child’s situation. The top priority is typically financial security. Much of this security comes from government services like Social Security Disability Insurance (SSDI), Social Security Income (SSI), and Medicaid. It is possible to create a legal structure that will allow funds to be held in a protective way while allowing your loved one’s continued eligibility for means-based government benefits like SSI or Medicaid. For instance, you can establish a supplemental needs trust that can be funded with your assets now, or the assets you would like to leave for the benefit of your loved one upon your death. A common funding mechanism is for a parent of a child with special needs to obtain a life insurance policy wherein the proceeds of that policy can be used to fund the supplemental needs trust upon their death.

Creating a SupportTeam

Beyond securing your child’s financial future, your family needs to identify a support team. Depending on the situation, it may be appropriate to discuss petitioning the court to appoint a guardian for your adult child with special needs. In the alternative, it may be appropriate to discuss less restrictive options available to ensure that someone can help your adult child with special needs manage their personal needs and medical decisions. A special needs trust must have an appointed trustee to oversee the trust. Your trustee may be different from the named guardian and is recommended. Involve your child with special needs in the discussions and planning process if possible. Many children with special needs are capable and want to provide input about who is involved in their lives.

Caretaking Options

Discussions about your child’s future can be difficult for parents. It is hard to imagine anyone will be able to match their ability to provide adequate care. Family members 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– Most individuals with special needs choose to remain with family members. Typically, the family knows the child’s routines and preferences the best. However, this arrangement often leaves family members as unpaid caregivers and risks their future earning potential. Family can share the responsibility and rotate caregiving to alleviate this problem, but it may not be the best solution for the individual with special needs.
  • Personal care professionals(PCA) – Professional caregivers are the primary method of non-family care. They manage housekeeping and organizational tasks, dressing, bathing, transportation, ventilator or catheter care, and more. PCAs can be hired through an agency, but many families hire and train individuals directly. They must be properly vetted and qualified.
  • Community-based homes and supported living arrangements– Adults with special needs may be capable of living in group homes that provide independence with support. Care providers live or work in these arrangements and offer services to help with everything from medication to decision-making and job applications. Living arrangements are typically communal, sharing activities, meals, and social groups.
  • Independent living arrangements– Some adults with special needs can live independently with the additional support of a PCA whenever needed. They may only need a few hours of PCA care daily to help with morning routines or mealtime. Others may have several PCAs providing 24-hour care. Arrangements with a roommate to provide backup support in exchange for a break on rent is also possible.
  • Assistive technology– Digital devices and the internet of things offer many assistive technologies for greater independence. Adults with special needs with severe mobility issues can control their home environment and share medical readings through online applications and telemedicine.
  • Day programs– Young adults with special needs may attend public schools until age 21. After 21, some day programs continue to provide similar education and structure. Educational services and programs help enhance their life skills and maintain social bonds with a community of their peers.
  • Long-term care facilities– Care specialists and special needs advocates currently regard institutional settings as a last resort. However, depending on the situation, a residential facility may be the best option. The Association of University Centers on Disabilities (AUCD) supports community and home living as an excellent solution for individuals with special needs or disabilities.

Letters of Intent

A letter of intent (LOI) addresses family history, daily schedules, medical care, education, benefits, employment, and a general overview of your child’s life. It also includes social and religious environments, behavior, foods (including allergies), and your hopes for their future. You can even explain preferences for funeral and burial services for your child with special needs.

Some options for the future of your child with special needs require private funding. However, special needs planning ensures all children and adult children with special needs can qualify for necessary care. Discuss care options with your family and a special needs attorney or disability lawyer to create the best plan possible. Please contact our law firm to speak with a qualified elder law and estate planning attorney to tailor a long-term care protection plan for you or your loved one.

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