People with autism and their families often have a variety of additional expenses required to meet their unique needs. Many are looking for financial assistance. Autism Speaks has compiled a list of different types of resources on this page to help you seek support in your area.
For personalized assistance, contact our Autism Response Team at 888-288-4762 (Spanish 888-772-9050) or [email protected]. Our financial access coordinator can provide you with information on accessing disability benefits, understanding insurance coverage, planning for the future and more!
There are many agencies and programs designed to support families affected by autism who are facing hard times and need financial support. Some of these are available to all families who meet financial criteria, while others are specifically designed to support individuals with disabilities. We encourage you to explore all of these different funding sources to determine what your family may qualify for.
Autism Speaks Special Needs Financial Planning Tool Kit
State and Federal Disability Benefits
- Supplemental Security Income (SSI)
- Social Security Disability Insurance (SSDI)
- Medicaid Waiver
- ABLE Accounts
Community and State Financial Assistance
Emergency Assistance
Family Grant Opportunities
Special Needs Financial Planning Tool Kit
Mapping out the financial future of your child can seem like a daunting task, but having a plan in place can help ease your fears. The Autism Speaks Special Needs Financial Planning Tool Kit was created to provide you with all the information that you need to develop that plan.
The information in the Financial Planning Tool Kit comes from top experts in the field with many years of both personal and professional experience with special needs financial planning. We have also included some personal stories from other parents or caregivers like you.
Learn more and download the Financial Planning Tool Kit free of charge.
State and Federal Disability Benefits
Supplemental Security Income (SSI)
Supplemental Security Income, or SSI, is a monthly government payment through Social Security which is designed to support people who are aged (65 and older), blind, or disabled. Individuals with autism may be eligible to receive SSI to help support them financially.
Information on this and other programs can be found at www.ssa.gov. You can also review the following links which further explain the SSI program for children and adults with disabilities, family financial criteria, how to apply, and more.
Social Security Disability Insurance (SSDI)
Social Security Disability Insurance is another financial benefit through Social Security. This payment is available for adults who have a disability that began prior to age 22. SSDI can be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.
For a disabled adult to become entitled to this “child” benefit, one of his or her parents:
- Must be receiving Social Security retirement or disability benefits; or
- Must have died and have worked enough to qualify for Social Security.
These benefits also are payable to an adult if he or she is disabled at age 18, and if they received dependent’s benefits on a parent’s Social Security earnings record prior to age 18. We make the disability determination using the disability rules for adults. SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child doesn’t need to have worked to get these benefits.
For more information on SSI and SSDI, see this booklet called Benefits for Children with Disabilities.
You can find many more SSDI resources and information here.
Medicaid Waivers
Most states have a program for individuals with developmental disabilities called a Medicaid Waiver (also known as 1915(c) Home and Community Based Services). A Medicaid Waiver is designed to provide support services and care to allow an individual to remain at home or in the community, rather than in an institution, nursing home, or hospital. The benefits provided by these waiver programs vary by state, but most generally provide coverage for medical treatments, respite care, transportation, in-home support, and more. In some states, children do not need to meet eligibility criteria for Medicaid in order to qualify for a waiver. However, just like insurance laws, waiver criteria and availability varies from state to state.
You should also note that waivers may have different names in your state. For example, the “Katie Beckett waiver” is one type that is available in a number of states. Others may have names such as “Autism waiver,” “Person Directed Support waiver,” “Developmental Disabilities waiver,” or “Individual and Family Support waiver.”
See the following links to learn more about waivers in your state:
ABLE Accounts
A new type of savings option was made available for families of individuals with disabilities through the Achieving a Better Life Experience (ABLE) Act of 2014. The ABLE Act authorized the establishment of private tax-advantaged savings accounts that can help you save for long-term expenses without sacrificing eligibility for public benefits such as Medicaid and Supplemental Security Income (SSI).
These accounts are modeled after the current 529 education savings plans that help families save for future college costs. Once an account is established for a beneficiary, account contributions will accumulate tax deferred and any earnings will be tax free at the federal level if the money is used for qualified expenses.
Each state is responsible for establishing and operating an ABLE program. As of April 2016, over 40 states have enacted ABLE laws and bills are pending in many other states. For the latest legislative news on ABLE accounts, visit AutismSpeaks.org/Advocacy and follow @autismvotes on Twitter. To get involved in advocating in your state, sign up here.
Community and State Financial Resources
Community Action Agencies
A great place to start if you are looking for financial help is your local Community Action Agency. Nearly every community in the U.S. has a Community Action Agency. These are non-profit organizations which receive state and federal funding. They administer many assistance programs for low-income residents, including rental assistance, energy assistance, food and nutrition programs, case management, education and literacy programs, and emergency assistance. Your local Community Action Agency will be able to connect you with various programs and sources of financial assistance that are available in your area.
Please keep in mind that funding is often limited for assistance programs through Community Action Agencies. If possible, apply as early as possible for assistance (such as winter energy programs).
Housing Assistance
The Department of Housing and Urban Development (HUD) can provide you with advice on finding affordable housing. HUD sponsors housing counseling agencies throughout the country to provide free or low cost advice. For more information, you can call HUD’s interactive voice system at: (800) 569-4287.
You can locate your local HUD office on this page. They can give you information on affordable housing programs, rental assistance, and more.
There are also a number of programs through the federal government to help families purchase a new home. I have listed some resources below:
Other Places to Search for Financial Assistance
The United Way can help you connect with many resources and services in your area, and answer many questions about obtaining assistance. Call 2-1-1 or visit 211.org to learn about some of the options available to you.
NeedHelpPayingBills.com is a website which lists many sources of financial assistance. Scroll down and click on your state to locate additional sources of assistance.
USA.gov maintains information on a variety of government and other assistance. In particular, see the page on Government Benefits, Grants, and Loans.
The Patient Advocate Foundation is also a good place to search for grants and other financial assistance, particularly if someone in your family has a medical condition. You can search for resources based on medical diagnosis.
Emergency Assistance
In a crisis, it is often helpful to go to your Community Action Agency. Staff can connect you with any available resources, financial or otherwise, that are available in your area.
You can also contact your local United Way by calling 2-1-1 to be connected with many services and resources to help, or visit 211.org.
The Salvation Army can often assist in emergency situations as well, although funding may be limited. They can provide rental and housing assistance, utility help, food, shelter, and more. You can find your nearest Salvation Army center.
You can also use the following links to locate shelters in your area:
Family Grant Opportunities
Autism Speaks maintains a Resource Library for families, which contains a list of Family Grant Opportunities. Each of these grants are designed to help parents pay for a variety of needs related to autism treatment and care. You can visit the website for each listing to learn more about how to apply. Click here to see the current list of grants.
There also may be local grant opportunities listed in our online Resource Guide. Follow the link, then select your state and look under the category “Advocacy, Financial and Legal Resources” to find any available grant programs.
See here for tips on applying for family grants from one of our Autism Response Team coordinators: Tips on Applying for Financial Aid for your Family Member with Autism
iPads
Many organizations offer grants and programs to help individuals and families purchase an iPad. Please contact the Autism Response Team for the most up-to-date list of iPad programs: call 888-288-4762 or email [email protected].
For additional information and resources on technology, see Autism Speaks’ Technology Central page.
Autism Speaks also maintains an Autism Apps database to help you locate the best apps for communication and learning. This database includes information on any scientific research that demonstrates an app’s effectiveness.
See this page for additional ideas about how to get an iPad or tablet: How to get an iPad Funded.
