E-Speaks eNewsletter
As a person with autism or close relative, you often have a variety of additional expenses required to meet your unique needs. Many are looking for financial assistance. Autism Speaks has resources and information that can help you with your financial concerns.28th Anniversary of the Americans with Disabilities Act
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Special Needs Financial Planning Tool Kit
Mapping out your child's financial future can seem daunting but having a plan can help ease your fears. This tool kit will provide you with essential information and guidance. The information included comes from top experts in the field.
Special Needs Financial Planning Tool Kit
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Autism Speaks Financial Planner App
This app was developed alongside our tool kit to provide you with an easy-to-use interactive way to learn more about and manage your family’s finances.
Autism Speaks Financial Planner App
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Autism Speaks Special Needs Financial Planner app launches
Through a partnership with SunTrust Foundation, Autism Speaks is proud to launch the free Autism Speaks Special Needs Financial Planner app for iPhoneand Androiddevices.
This first-of-its-kind app just hit the Apple and Google stores. The Autism Speaks Financial Planner app has four main features:
My Plan: In My Plan, I can set my own goals and track my progress.
Locate: In Locate, I can find local attorneys and financial planners.
Budget: In Budget, I can track my family’s monthly revenues and expenses.
Info: In Info, I can read about important topics for planning for my child’s future.
Please click on the buttons below to download the app and please rate the app after using it.
Explore more:
Personalized assistance for your unique situation
Autism Speaks has compiled a list of financial assistance resources for you. In addition, our financial access coordinator can provide you with information on accessing disability benefits, understanding insurance coverage, planning for the future, and more. Read More
Autism Speaks Special Needs Financial Planner app launches
This first-of-its-kind app just hit the Apple and Google stores. The Autism Speaks Financial Planner app has four main features:
My Plan: In My Plan, I can set my own goals and track my progress.
Locate: In Locate, I can find local attorneys and financial planners.
Budget: In Budget, I can track my family’s monthly revenues and expenses.
Info: In Info, I can read about important topics for planning for my child’s future.
Please click on the buttons below to download the app and please rate the app after using it.
Personalized assistance for your unique situation
Financial Assistance
Financial Assistance
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 familyservices@autismspeaks.org. 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 kit free of charge here.
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.disability.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.
About SSI
What You Should Know Before You Apply for SSI Disability Benefits for a Child
Starter Kit to apply for SSI for a Child
Visit this page to find much more information and answers to frequently asked questions about Social Security benefits.
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 here.
You can find many more 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:
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 ABLE frequently asked questions, click here. For the latest legislative news on ABLE accounts, visit AutismSpeaks.org/Advocacy/Federal/ABLE 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. Click here and then select your location to find the agency closest to you.
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:
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. Follow this link, then 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. Click here to search their page.
Emergency Assistance
In a crisis, it is often helpful to go to your Community Action Agency (click here to find the agency for your area). 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 center by clicking here.
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 familyservices@autismspeaks.org.
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.
Understanding Social Security benefits and employment
For people with autism, a main concern when considering work is the possibility of losing their benefits. Autism Speaks developed a video and answers to frequently asked questions to ease your concern and help you on your search for a job that is right for you. Read More
Financial Assistance
For personalized assistance, contact our Autism Response Team at 888-288-4762 (Spanish 888-772-9050) or familyservices@autismspeaks.org. 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 kit free of charge here.
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.disability.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.
About SSI
What You Should Know Before You Apply for SSI Disability Benefits for a Child
Starter Kit to apply for SSI for a Child
Visit this page to find much more information and answers to frequently asked questions about Social Security benefits.
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 here.
You can find many more 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:
- Information on Home and Community Based 1915(c) Waiver Programs from Medicaid.gov
- State-by-state Summary of Waiver Programs
- Medicaid.gov Search for Waivers in Your State
- More Information on Medicaid and Waiver Programs from The Arc
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 ABLE frequently asked questions, click here. For the latest legislative news on ABLE accounts, visit AutismSpeaks.org/Advocacy/Federal/ABLE 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. Click here and then select your location to find the agency closest to you.
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:
- U.S. Department of Agriculture (USDA)
- U.S. Department of Housing and Urban Development (HUD)
- Federal Housing Administration (FHA)
- AmeriDream, Inc.
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. Follow this link, then 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. Click here to search their page.
Emergency Assistance
In a crisis, it is often helpful to go to your Community Action Agency (click here to find the agency for your area). 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 center by clicking here.
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 familyservices@autismspeaks.org.
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.
Understanding Social Security benefits and employment
Family ServicesUnderstanding Social Security benefits and employment
Understanding Social Security benefits and employment
For people with autism, a main concern when considering work is the possibility of losing their benefits. Autism Speaks developed the video and frequently asked questions below to ease your concern and help you on your search for a job that is right for you.
What are some of my options to keep social security and work?
Here are some examples of work incentives that you can consider:
Ticket to Work (TTW)
The TTW Program is an innovative program that can connect you with free employment services to help you decide if working is right for you, prepare for work, find a job or maintain success while you are working. It is a free and voluntary service. If you choose to participate, you will receive services such as career counseling, vocational rehabilitation, and job placement and training from authorized Ticket to Work service providers. Learn more here.
Impairment-Related Work Expenses (IRWE)
Social Security can deduct the cost of certain items, such as transportation services, medical devices, etc., that are directly related to your disability and you must have to work. This means that when Social Security measures your income compared to the benefit limit, they will subtract the cost of these expenses. Learn more here.
Plan to Achieve Self-Support (PASS)
A PASS allows you to set-aside expenses related to achieving a work goal. These expenses may include start-up funding for a business, a vocational assessment, training, etc. Social Security does not count the income you set aside when they calculate your SSI payment amount or eligibility for SSI. For example, a PASS Must be specific to achieve a detailed work. Learn more here.
Expedited Reinstatement (EXR)
If you find employment that causes you to lose your benefits and you lose your job for some reason, you may be able to have your benefits started again right away through a request for Expedited Reinstatement. To qualify, you must apply within five years of losing your Social Security Disability benefits due to gainful employment. Learn more here.
What is the Medicaid Buy-In program?
This program allows workers with disabilities who have earnings that exceed traditional Medicaid rules to “buy in” to Medicaid coverage. Ideally, it means workers with disabilities do not need to choose between healthcare and work. Learn more here
Can someone help me understand my options?
Yes! There are a couple of free resources available to help you through this process.
Work Incentives Planning and Assistance (WIPA) Projects, where you can meet with Community Work Incentive Coordinators (CWICs). CWICs are benefits counselors who are trained and certified by Social Security to help you make informed choices about work.
CWICs can help make sure you have the right information for success. They will help you:
Protection and Advocacy for Beneficiaries of Social Security (PABSS) organizations, offer free legal help and advocacy assistance during your search for employment. They can advise you on challenges you might face such as:
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"Trending on social" highlights one of the many heartwarming images shared with us by the autism community on our social channels. You can find this photo and many others by following us on Instagram. See More
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Understanding Social Security benefits and employment
For people with autism, a main concern when considering work is the possibility of losing their benefits. Autism Speaks developed the video and frequently asked questions below to ease your concern and help you on your search for a job that is right for you.
What are some of my options to keep social security and work?
Here are some examples of work incentives that you can consider:
Ticket to Work (TTW)
The TTW Program is an innovative program that can connect you with free employment services to help you decide if working is right for you, prepare for work, find a job or maintain success while you are working. It is a free and voluntary service. If you choose to participate, you will receive services such as career counseling, vocational rehabilitation, and job placement and training from authorized Ticket to Work service providers. Learn more here.
Impairment-Related Work Expenses (IRWE)
Social Security can deduct the cost of certain items, such as transportation services, medical devices, etc., that are directly related to your disability and you must have to work. This means that when Social Security measures your income compared to the benefit limit, they will subtract the cost of these expenses. Learn more here.
Plan to Achieve Self-Support (PASS)
A PASS allows you to set-aside expenses related to achieving a work goal. These expenses may include start-up funding for a business, a vocational assessment, training, etc. Social Security does not count the income you set aside when they calculate your SSI payment amount or eligibility for SSI. For example, a PASS Must be specific to achieve a detailed work. Learn more here.
Expedited Reinstatement (EXR)
If you find employment that causes you to lose your benefits and you lose your job for some reason, you may be able to have your benefits started again right away through a request for Expedited Reinstatement. To qualify, you must apply within five years of losing your Social Security Disability benefits due to gainful employment. Learn more here.
What is the Medicaid Buy-In program?
This program allows workers with disabilities who have earnings that exceed traditional Medicaid rules to “buy in” to Medicaid coverage. Ideally, it means workers with disabilities do not need to choose between healthcare and work. Learn more here
Can someone help me understand my options?
Yes! There are a couple of free resources available to help you through this process.
Work Incentives Planning and Assistance (WIPA) Projects, where you can meet with Community Work Incentive Coordinators (CWICs). CWICs are benefits counselors who are trained and certified by Social Security to help you make informed choices about work.
CWICs can help make sure you have the right information for success. They will help you:
- understand the impact of earnings on all of the benefits you receive
- know which Social Security Work Incentives you’re entitled to
- make a successful transition to financial independence
Protection and Advocacy for Beneficiaries of Social Security (PABSS) organizations, offer free legal help and advocacy assistance during your search for employment. They can advise you on challenges you might face such as:
- requesting job accommodations
- protecting your rights to housing and transportation to and from work
- accessing services from community organizations
- understanding conditions of your employment
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