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Parent to Parent, Part 2: Practical Considerations for End-of-Life Planning

In part one of this two-part series, we addressed the fact that parents and caregivers for loved ones with disabilities such as autism will need to plan in advance for their eventual death to ensure the appropriate steps are taken for their loved one in their absence. In abstract terms, this process includes envisioning the child’s best possible future and a plan to make it possible, communicating that plan, and then putting practical considerations in place.  In this entry, we’ll go over some of those practical considerations in-depth.


Consider drafting a letter of intent. Although not a legally binding document, a letter of intent is a very important document which communicates your desires for your child and gives invaluable details to all future caregivers after your death. It can cover a broad range of details such as vital statistics, pertinent medical information, daily schedules and routines, a general financial picture, details about your child’s current therapies/services, and suggestions/insights about what might be needed in the future as your child ages. It can also contain important information such as where to find legal documents and records as well as a contact log of current providers, key family members, and other individuals that are important in your child’s life. This can be included with your legal estate planning documents and should be updated annually or whenever there are changes in your child’s life that would warrant doing so. Think about who the eventual key players would be in your child’s life (siblings, other family members, trusted friends) and don’t be afraid to have some conversations with them about what may eventually be needed and/or desired for your child.


Consider drafting a will and special needs trust. Many families will hold off on planning for a special needs trust because they feel that it would require a huge amount of money up front. One of the most important things to know about a trust is that it does require the services of an attorney or certified special needs planner, but does not actually have to be funded until the death of the caregivers and can be done through provision of life insurance policies, retirement accounts, annuities, or other provisions. In addition, a special needs trust can be a very important tool in protecting an individual’s disability benefits while providing for the costs of general living expenses, special therapies, recreational costs, and other expenses not covered by insurance. The key consideration here is choosing a competent legal professional who has expertise in the field of estate planning, elder law, and/or special needs planning. For more information on finding a qualified professional in your area, contact your local Autism Resource Specialist.


Consider starting an ABLE account for your child. ABLE accounts, which can be started at any time, allow eligible individuals to save and fund various qualified disability expenses without endangering their eligibility for government benefits such as Medicaid and Supplemental Security Income (SSI). These accounts are similar to 529 college savings accounts, and any person — such as a family member, friend or the individual with a disability — may contribute. An ABLE account can be set up relatively easily online without assistance of an attorney, and the individual can benefit both now and after the death of a parent and/or caregiver.


Consider making sure your child has access to any funded services that are now or will become available.  If you have not already done so, contact your local Management Care Organization (MCO) to find out if your child is eligible for Innovations Waiver or other state-funded services available through the North Carolina Division of Health and Human Services. Waitlists for services are long, so it is important to connect with services as early as possible. Other services to be aware of include Supplemental Security Income (SSI) or Social Security for Disabled Adults) (SSDI) which comes with funding for basic healthcare. This can be especially valuable if your child is covered by your health insurance until your death.


Consider making sure your child has adequate support in decision-making. Explore tools through tools such as guardianship or its alternatives (such as limited guardianship, power of attorney, representative payee, and supported decision-making). Parents need to keep in mind that once their child turns 18, he/she is considered an adult and competent to make his/her own decisions. Many of our adult children with autism may require guidance and support to some degree. A good tool for families of older teens and adults is our free online webinar “Your Teen Just Turned 18,” and there are several other helpful resources on our Transitioning to Adulthood web page.


Consider future educational and/or employment options after high school. ASNC has many resources across the state which can assist your adult child in finding meaningful employment in the community. Check out the options at our employment supports page, or contact your Autism Resource Specialist for assistance.


Consider what residential options may be needed for your child as he/she grows into adulthood. Residential needs will vary greatly from individual to individual depending on their level of independence. If you don’t feel your child would be able to live independently, you will want to take the time to get information on what residential services are currently available and what might be appropriate, whether it be living in an apartment with some support or in a congregate setting such as a group home or alternative family living placement.


Consider how to connect your child early to community resources. Help your child make connections that could continue after you are gone by participating and/or volunteering in community activities, joining programming at the local YMCA, city parks, the Arc, or by connecting with a faith community for support. Check out all-inclusive avenues of support in community arts programs, sports, or other activities. Then don’t forget to include information about these supports and any key individuals of contact in your letter of intent.


Consider the desires of your child/adult on the spectrum. While some adults with autism may find it difficult to think through possible avenues for their future, many or most will be able to contribute their dreams and desires in a meaningful way. Don’t forget to include them in any long-term planning to the utmost degree that you are able to do so, as everyone deserves to live out their lives as independently as possible. You may also wish to consider how you will prepare your child for the time that you will no longer be around. Social narratives on death and dying may be a good way to start with some individuals, keeping in mind that all individuals with autism are unique and process things differently. Another good resource for you might be your local hospice agency.


Finally, consider that all parents/caregivers need to plan for their child’s future, but parents of children with a disability such as autism probably need to be even more vigilant. Planning as early as possible helps to set your child up for future success in addition to giving you as the caregiver assurance and peace of mind.


Wanda Curley, an Autism Resource Specialist in the Triad office, can be reached at wcurley@autismsociety-nc.org.

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