Financial Assistance—Autism Toolkit

What is Supplemental Security Income?

Supplemental Security Income (SSI) benefits support families who are raising children with disabilities that affect home, school, and community functioning. A child is eligible because of financial need and level of disability. Eligible families will receive money monthly to support the child's needs. A family who does not have low income but has many children or costs might qualify for this program too. In most states, the child will then also automatically become eligible for Medicaid, publicly funded health insurance.

What is a Home- and Community-Based Services (HCBS) waiver program?

The most common type of financial support for families is known as a Home- and Community-Based Services (HCBS) waiver program. Funding from an HCBS waiver depends on the level of the child's disability and how it affects the family. Funding may be available at any income. For a child or teen younger than 18, income means the family's income. For a young adult 18 or older, income means the young adult's income. However, many states have long waiting lists. Parents must call their local HCBS office as soon as their child is diagnosed as having ASD to get onto the waiting list. Once the child receives a spot, a case manager begins working with the family. Together, they work on a yearly service plan to choose the supports the family needs. These supports may include respite services so parents can take a break (in-home, at a center, or at camp), medical equipment, home remodeling for safety reasons, or other needed supports.

Children who qualify for waiver services might also qualify for medical assistance or another public insurance.

What is available in my state?

Because each state has different services, families must call their state or county offices of the departments of health and human services and mental health or their state developmental disabilities organizations. Other sources of local and state information are

• Autism Society ( www.autism-society.org ) local or state chapters

• Autism Speaks ( www.autismspeaks.org ) local or state chapters

• Early intervention programs (Go to the National Early Childhood Technical Assistance Center [ www.nectac.org ] to find early intervention programs in each state.)

• Easterseals disability services ( www.easterseals.com ) (Services for children and adults who have ASD are available in >20 states.)

• Local parent groups (eg, Family Voices) ( www.familyvoices.org ), which has state pages and contacts on its site

• School district special education coordinators (Call your child's school to ask for further information.)

• Title V agencies in each state (Guide is available at www.amchp.org/AboutTitleV/Documents/UnderstandingTitleV.pdf ; a few states provide some services for children who have ASD.)

What is a special needs will and trust?

Some public supports (such as SSI) depend on the family finances. If you give money to a child it may affect eligibility for SSI, so it is important to find out how much money your child can have before accepting a gift or an inheritance. However, money can be protected with a special needs will and trust.

A very important part of the will is a statement that says the money a child inherits is to be used only for items and services not covered by Medicaid, SSI, or other federal funding. If you leave out this statement you could lose federal benefits until the inheritance is spent down. In some cases, the person with ASD may need to repay the government for services provided in the past. Also, siblings' shares of inherited money may be at risk. You should get help from an experienced lawyer when developing a special needs will and trust. Various nonprofit and for-profit groups can help parents. Information about special needs trusts is included in the Autism Speaks Transition Tool Kit: For Families on the Journey from Adolescence to Adulthood ( www.autismspeaks.org/family-services/tool-kits/transition-tool-kit ).