Children with Special Needs

After a decade of helping families with special needs obtain Medicaid and SSI benefits, it became clear to me that families also need help with longer term planning. As a parent, thinking about the “What ifs” when you have children is difficult enough, but knowing that your child has additional needs that are not part of normal planning can be overwhelming.

As an attorney, I would often have a conversation like this with my clients, “Your child is severely autistic, do you have a plan for what will happen if you are in a car crash?” “Who will take care of her if you cannot?” These questions were often answered with an uncomfortable silence.

I have also helped families who have had to confront these uncomfortable issues when the primary caregiver of a child with special needs has passed and no planning was in place. The feelings of guilt thrust on to those family members who cannot care for the child left behind makes difficult decisions even harder.

While planning for your family is always important, planning when you have a special needs child is crucial.

Adults with Special Needs

Sixty-one million adults in the United States are living with a disability. Many of those are adults with special needs who cannot live independently. Disabled adult children are living longer which can make decisions difficult for their aging parents. Proper planning can ensure that disabled adult children can continue to live in a manner that provides the greatest level of care and continuity of life possible.

Key aspects of special needs planning include:

  1. Special Needs Trust: A Special Needs Trust (SNT) is a legal arrangement that allows assets to be set aside for the benefit of a person with special needs without jeopardizing their eligibility for government assistance programs like Medicaid and Supplemental Security Income (SSI). The trust holds and manages the assets, and a trustee is appointed to oversee the distribution of funds for the individual’s care, education, and other expenses.
  2. Letter of Intent: This is a non-binding document that serves as a guide for caregivers and trustees, outlining the individual’s personal history, medical needs, preferences, and routines. The letter of intent can help ensure continuity of care and provide valuable information to future caregivers.
  3. We also coordinate with VEST – an online software that takes the place of your letter of intent. 
  4. Guardianship: Guardianship is a legal arrangement where a person or entity is appointed to make decisions on behalf of the individual with special needs. This includes decisions related to medical care, housing, and finances. Depending on the individual’s capacity, a guardian may have full or limited decision-making authority.
  5. ABLE Accounts: Achieving a Better Life Experience (ABLE) accounts are tax-advantaged savings accounts for individuals with disabilities. These accounts can be used to save for disability-related expenses without affecting the individual’s eligibility for government benefits.
  6. Life Insurance: Life insurance can provide financial security for the family and help cover expenses associated with caring for the individual with special needs. Parents or caregivers may consider purchasing life insurance policies, naming the Special Needs Trust as the beneficiary to ensure the funds are used for the intended purpose.
  7. Coordination with other family members: It is essential to communicate with other family members involved in the care and support of the individual with special needs. This can help ensure that any gifts or inheritances provided to the individual are structured in a way that does not jeopardize their eligibility for government benefits.
  8. Professional assistance: Special needs planning can be complex, and it is essential to work with experienced professionals, such as attorneys, financial planners, and medical professionals, to create a comprehensive plan tailored to the individual’s unique circumstances.

By carefully considering and addressing these aspects, families can create a special needs plan that provides for the long-term care and well-being of their loved one with disabilities.

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