Jump to content


National Autism Network

Join Today for FREE!

Look here for additional Financial & Estate Planning resources. Go to resources



Financial and Estate Planning



*Laws regarding estate planning vary from state to state. The article below includes general information about broad topics concerning estate planning and is not meant to serve as legal advice in any way. All financial and estate planning should be carried out by a qualified professional.

Parents should not hesitate to conduct financial and estate planning for their child. Financial and estate planning is an important and an emotional subject. If your child is a minor (18 or under) or you care for them as an adult because of a disability and you are without a living will, then the designation of a guardian for your child could be determined by the courts should the need arise. In addition to selecting a guardian, it is also recommended that parents of children with a disability should do the following:

  • Assign a health care proxy if their child is unable to dictate his/her own medical needs

  • Open a special needs trust to help ensure financial stability

  • Draft a Letter of Intent to ensure that those who care for your child in the event of your passing know your child’s history, your child’s current status, and the hopes you have for your child’s future.

These types of decisions are not ones parents want to take lightly as they prepare for the potential of not always being there for their child. Estate planning is especially important for families with special needs children because “parents often do not understand all the requirements and potential difficulties when designing their child’s future.”1 Creating legal and financial safeguards is the best way to ensure your child will be afforded the opportunity to prosper in the event of your passing.


Drafting a Will
To put it simply, a will is “a document in which a person specifies the method to be applied in the management and distribution of his estate after his [or her] death.”2 Despite the importance of having a will, a 2011 Associated Press survey found that 64% of baby boomers do not have a living will.3 Although it is possible to draft a will on your own, it is wise to seek out the professional expertise of an attorney. Parents should contact their local disability advocacy groups to locate an attorney who specializes in legislation pertaining special needs children. There are major things to consider when writing a will that includes a child with a disability as a beneficiary. Drafting a will is also the only legitimate way you can name a legal guardian for your child. A legal guardian is a person who is given the legal right to be “responsible for the food, health care, housing and other necessities of a person deemed fully or partially incapable of providing these necessities for himself or herself.”5 By creating a will you determine who receives your assets after you pass. It is important to consider how your inheritance can affect your child’s ability to receive government assistance. For example, individuals are no longer eligible for Supplemental Security Income (SSI) or Medicaid if their income exceeds $2,000.6 A direct inheritance beyond this amount must be spent before your child is eligible to receive any government financial assistance. Unfortunately, the lifetime expenses of raising a child with autism can be millions of dollars, and very few people have the means to bequeath that amount to their children.


Another thing to consider is the designation of a health care proxy for your child. A health proxy “is a legal document in which you designate a person, called agent, to handle health care decisions for [your child].”7 This individual will be responsible for making potentially life-altering decisions for your child if he/she is unable to due to their disability.


Special Needs Trust
It is a common misconception of parents that SSI and Medicaid will be able to financially provide for a child after their passing.6 Sadly, as discussed above, your child may no longer qualify for SSI and Medicaid if they inherit more than $2,000. Parents of children with disabilities should determine if their child qualifies for a special needs trust, which entitles the beneficiary to still be able to qualify for government benefits.4 Parents can implement a special needs trust to provide their child with various resources and still ensure that he/she is still eligible for government resources. The establishment of a special needs trust has been described as the “only reliable method of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it.”8 Government regulations have mandated that an individual with a disability cannot have a trust, but a special needs trust is administered by a trustee who delineates when and how much the person with the disability receives.8 Generally, a special needs trust will not provide basic life expenses (food, shelter, etc.), but “essential quality of life expenses such as clothing, vocational training, facilitative technologies and travel (both around town and long distance) may be provided. Certain health care expenses that are related to the person’s disability (occupational therapy, speech therapy, etc) may be provided by the trust.”6 According to the World Institute on Disability9, the following are the three types of special needs trusts:


  • Family Special Needs Trust: Parents/family provide the money for the trust through a will or by sometimes purchasing life insurance payable to the trust. The trustees can be the parents or an appointed friend or relative. The most important factor in creating a “family special needs trust” is that “the money cannot be used for housing, food, or clothing. Those are considered ‘basic needs’ under SSI and Medicaid laws. If the disabled person is receiving free housing, food or clothing from someone else, including a family member or trust, then the government benefits will be reduced or eliminated.”9 Parents, relatives, and any other individuals may contribute to this type of trust, with the exception of the individual with the disability.1

  • Pooled Special Needs Trust: This type of trust is established through a non-profit association, which allows for anybody to individually contribute to the fund, including the individual with the disability (the trust’s beneficiary). Funds are collected from multiple families to provide for multiple beneficiaries. Pooled trusts are advantageous for individuals of modest means because they are willing to handle smaller accounts than a bank or trust company. When an individual beneficiary passes, the remaining funds stay in the trusts to help other individuals with disabilities. Like a family needs trust, the pool trust is set up by the parents and other family members who explain what they want the trust to pay for, and who should be consulted about these matters.9

  • Court Ordered Special Needs Trust: This type of trust is used in special circumstances, such as when a person with a disability has inherited money or received a court settlement. Since the individual actually owns the money, the funds are not eligible to be put into a typical special needs trusts. A disabled’s person parent, grandparent, legal guardian, or a court are the only individuals allowed to set up this type of trust for the individual. An individual with a disability can only qualify for this type of fund if they are less than 65 years old and meet the medical standards necessary of Social Security, in terms of the disability.

Like your will, setting up a special needs trust is an important milestone and can be a complicated issue. It is critical that you hire an attorney who specializes in special needs children to preside over the development of a special needs trust.


Letter of Intent
The Letter of Intent is an important, but not legally binding, document created by the parents that includes the child’s history, current state, and the hope parents have for their child’s future.10 The letter should be the best representation of your child as possible so that the individual(s) involved with caring for your child will have the best guidance possible when the time comes.11 Since you are effectively planning out your child’s life, you should include your child in crafting the Letter of Intent to the maximum extent possible. After including basic information, a dialogue between you and your child about his/her favorite things, what he/she wants to do when they grow up, future living arrangements, and other facets of live can help you to construct this document.11 Like the drafting of your will or the creation of a special needs trust, you should not hesitate to construct a Letter of Intent. Remember, although this document is not legally binding, it is helpful for those who will be caring for your child in the event of your passing to carry out your wishes. The task of summing up your child’s history, likes/dislikes, medical needs, strengths/weaknesses, and your goals for your child regarding education, employment, residence, etc. can seem daunting. An article, titled “The Letter of Intent”, elaborates on some of the of the Letter of Intent discussed in this section and includes a helpful worksheet for when you are considering your child’s future.



*The above article is for information purposes only. Individuals seeking to invest in financial and estate planning for their child with special needs should contact an attorney who specializes in special needs children. Visit the National Autism Network’s Resource Directory for attorneys and financial planning experts in your area.


References