Many individuals who experience Autism require ongoing support throughout their lifespan. One of the primary worries of family members is, “What will happen to my loved one with Autism when I am no longer able to provide care for them due to my own aging, illness or death?”
With careful planning this concern can be lessened. There are significant details to navigate, including financial and legal concerns for children and adults with Autism who require ongoing support that extends beyond what a family can provide.
This could be because the family member with Autism outlives their familial support network, the needs extend beyond what a family can provide due to their own healthcare needs, or a host of other circumstances.
Individuals and families should be empowered to make a plan for their future. One planning tool that may help is the Charting the Lifecourse framework. This framework is designed for individuals and family members to design and plan their life and advocate for support.
The financial security of many individuals with Autism depends upon such public benefits as Medicaid and Supplemental Security Income (SSI). Based upon the services that your family member will require throughout life, a special needs attorney can help you determine eligibility for government assistance. Then, with the help of a financial advisor, you can establish savings and investment goals in order to provide additional funds needed to support the lifestyle you envision.
Some individuals may need income support while they are in school or searching for employment. The Social Security Administration (SSA) provides information about eligibility for the Supplemental Security Income program, the Disability program, as well as the Retirement program. It is extremely important for families to become familiar with Social Security work incentives so that public benefits do not prevent individuals from trying to work or going back to work. The SSA Red Book can help individuals and families work through these work incentives.
Medicaid & Medicare
Medicaid provides health care as well as long term services and support for many qualified individuals who experience Autism. The Centers for Medicare and Medicaid provides information on eligibility pathways and resources for individuals and families. Under a Medicaid waiver, a state can waive certain Medicaid eligibility requirements, covering care for people who might not otherwise be eligible for Medicaid. Find out more about Medicaid state plans and state Medicaid waivers.
The Autism Source™ Resource Database is the most comprehensive database of its kind. The Autism Society strives to offer only credible and reliable resources to its constituents, therefore the Autism Society has employed its nationwide network of affiliates and collaborated with other Autism organizations and professionals throughout the U.S.
The Autism Society also runs a National Helpline five days a week, Monday-Friday 9:00am – 9:00pm US Eastern time. Please keep in mind that the helpline does not provide direct services/assistance, such as treatment, legal services, and case management. However, trained Information & Referral (I&R) Specialists can provide many resources to services and support across the country. To speak to an I&R Specialist directly, call 800-3-AUTISM (800-328-8476).
ABLE - Achieving a Better Life Experience
Living with a disability is often associated with significant amounts of extra costs. That’s why individuals and families can now contribute to ABLE accounts — tax-advantaged savings accounts that can fund disability expenses. Get more information or find out how to open an account in your state in the ABLE National Resource Center.
Estate planning is one important aspect of future planning. Below are a few areas for families to consider with estate planning.
Special Needs Trust (SNT)
Powers of Attorney
Letter of Intent
Guardianship and Alternatives
Individuals who experience Autism display great differences in decision-making capability. However, every individual, when they reach the age of 18 (19 or 21 in some states), is legally recognized as an adult. That means that unless legal action is taken, an individual has the right to make their own decisions regarding medical care, finances, education, and other important matters.
Guardianship is a significant removal of agency for an individual and should be considered very carefully. The goal, of course, is to minimize any interference with someone’s independence, while ensuring their health, safety, and protection from exploitation. If an individual member needs assistance, there are various legal approaches to consider.
Supported Decision-Making (SDM) allows individuals with disabilities to make choices about their own lives with support from a team of people they choose. Individuals with disabilities choose people they know and trust to be part of a support network to help with decision-making. SDM is an alternative to guardianship. Instead of having a guardian make a decision for the person with the disability, SDM allows the person with the disability to make their own decisions. Find out more about SDM on the Center for Public Representation or the National Center for Supported Decision-Making website.
- Financial power of attorney: Without relinquishing control over personal finances, an individual grants an agent decision-making authority for the purpose of assisting in financial management. No court action required.
- Educational power of attorney: Authorizes another party to have access to the individual’s educational records and to make decisions concerning Individualized Education Plans (IEPs) and postsecondary education. No court action needed.
- Full guardianship: Guardianship requires a court evaluation and transfers full responsibility for medical, financial, residential, and many personal care decisions to another party. In some states, financial authority must be invested in a conservator, who may be the same individual as the guardian.
- Limited guardianship: Restricts the guardian’s responsibilities. The guardian might, for instance, be charged with making choices that relate to health care and housing, with the ward retaining all other decision-making capability. This requires a court appointment.
- Health care proxy: Names an agent empowered to make medical decisions on the individual’s behalf. No court intervention is required, and the agreement can be dissolved at any time.
Caregivers also need support. The HHS Administration for Community Living provides a list of federally funded programs supporting caregivers.
Grief and Bereavement
Unfortunately, loss and grief are part of life. All people, including children and adults who experience Autism, grieve in their own unique ways. Grief can be complex for any of us. It is important to acknowledge that any loss can cause grief. Loss of a favorite toy or routine as well as the loss of a house, school, or family member can be very significant. All people need support and understanding when they are experiencing the challenges of loss and grief, including those who experience Autism.
The Georgetown University Center on Disabilities offers this resource: Complex and Moral Issues: End of Life Decisions.
See also the Center for Loss & Life Transition for a wide number of useful resources in grief and loss.