Families with Autism Helping Families with Autism
Who Pays for What?!

DISCLAIMER: This information is not legal advice. Seek the advice of an attorney for information specific to your situation. Not all families who need services receive services. This information is current as of late [2009]– it is recommended families check on information & laws that can and do regularly change.

Not a day goes by that a family with a beloved child affected by autism wondering “how will I afford what my child needs?” The costs of raising, educating, treating and caring for a child with autism can be $10,000 to $100,000 or more annually. Lifetime costs vary from $5,000,000 to $7,000,000 depending on the unique issues of the individual. That is a lot for any one family to shoulder.

The process of navigating the “system” of services and assistance in place to support families with special needs children can be frustrating and extremely time consuming. Finding out what is available and the rights of the person affected by autism is crucial to the process. What is also frustrating is that many families could follow all the rules and regulations and still not obtain a free and appropriate education for their child. The success of each family success varies according to the unique needs of the child and the environmental particulars. There are no guarantees that a child with autism will receive exactly what he/she needs.

The goal of TACA is to provide families with the guidelines about the laws and resources in place to help families affected by autism. 

Please remember: The goal of this outline is to provide information from parents to parents on where to start researching for funding options available to a family with a special needs child. It is very important to remember:

  • By federal law, specifically the Individuals with Disabilities Education Act (IDEA), a Free and Appropriate Public Education (FAPE) should be provided to ALL CHILDREN. You have been paying taxes and have a right to seek assistance for your special needs child.

  • Hard work and diligent efforts (a.k.a. the squeaky wheel gets the grease) generally pays off in receiving services and support for your child. Parents must be excellent researchers and records managers, and persistent on behalf of their child.

  • Many TACA families use special education attorneys or advocates to help them through this difficult maze. I did.

Filling “Buckets”

Goal: Use your wallet last

  • There are resources available and by law, government agencies who should help.

  • Taking care of a special needs child could be long term–so use your wallet wisely and prepare for the future.

Getting Services Paid

Less than 3 years of age

(In the order of responsibility)

  • State/early intervention agency

  • Health insurance provider (check insurance parity laws in your state)

  • Medicaid–Autism Waiver

  • Private, meaning “parent pays”

  • Other: Private loans, public state loans, etc.

3 years of age and older

(In the order of responsibility)

  • School district (educational needs) and state agency (non-educational needs)

  • Health insurance provider

  • Medicare– Institutional deeming,

  • Private, meaning “parent pays”

  • Other: Private loans, public state loans

FIRST: What Difference Does the Autism Diagnosis Make?

  • A diagnosis of autism entitles your child to receiving needed services provided by your:

    • State/early intervention agency

    • School District

  • State and federal resources (as applicable)

  • It is important to receive the appropriate diagnosis per your child’s issues

  • A diagnosis is not forever!

  • A diagnosis is the key to unlocking the door to services and early intervention

  • As your child’s advocate, you do NOT have to only accept what’s offered!

SECOND: What Services Can My Child Get?

  • Your child can get as much service, or as little, as you can show that he/she needs.

  • These services can change to accommodate growth, development, age, and other needs relevant to your child.

  • All of our kids and all of our families are different. Ideally, you should research the interventions that YOU believe can help YOUR child and/or your family, and go for those.

State/Early Intervention Agency

“Behaviorally based before and after three years of age services.”

  • Category examples: health, safety, and self-help needs.
    All services prior to age 3 including: respite, potty training, diapers, behavior intervention, feeding programs, and others.

  • AN IMPORTANT QUESTION: What is the state/early intervention agency’s role in helping my child? Huge. Ask your agency for an evaluation IMMEDIATELY upon suspicion of any developmental delay. It’s never too early, and never too late.

School District

“Educationally based and AFTER three years of age services”

  • In-home programs and in-school programs (behavior based)

  • Itinerant services such as: speech, occupational and physical therapy, ABA (Applied Behavior Analysis), TEACCH (Treatment and Education of Autistic and Related Communication Disorders), social skills, inclusion to mainstream classes. Anything that is EDUCATIONALLY NECESSARY.

  • NOTE: If the district does not have services to offer that are needed, they must pay for outside companies to provide the necessary needed services.

Health Insurance

State & Federal Resources

  • Medicaid

  • SSI (Supplemental Security Income) is a needs-based program that provides monthly income (about $500) to people with low income. Disabled minor children who live with one or two parents may qualify for SSI, but only if the parent income and other resources meet the income limits. To give you a rough idea of the limits, a two-parent family with one other child in addition to the disabled child has an income limit of about $2,300 per month, and resources of less than $2,500 in cash or bank accounts, and no more than one car. Disabled children who do NOT live with at least one parent, OR who are at least 18 years of age, may qualify for SSI if they meet the income and resources limits on their own.

  • The Katie Beckett waiver (aka Autism Waiver) is yet another program in which a disabled child can qualify for free Medicaid (health benefits) by waiving the parental income limits. This is also referred to as a “deeming waiver” or, in California, a “Medi-Cal waiver.” It does not provide an income benefit.

  • Caps on these services are incredibly low: i.e., speech and OT (occupational therapy) services are less than $2,000 per year!

Bottom Line – THIS IS THE MOST CONFUSING PART – your state agency coordinator is SUPPOSED TO GUIDE YOU, but may not do so!

Families in the Military

TACA Programs

  • Families in Crisis: One-time assistance for families in a crisis or at the brink of a crisis.

  • Adopt-a-Family Holiday Campaign: During the holidays this is a campaign that helps families of all faiths.

  • Social Club for Teens with autism. This is a program in development.

  • Marriage and family counseling - TACA is developing a new program for couples to receive free marriage counseling. This program is under development. Please contact our Families in Crisis Manager Moira Giammatteo for details.

  • Mentor program: A program that connects experienced parents of children with autism with new parents.

  • TACA Autism Journey Seminar For families with children diagnosed with autism in the last two years. Information covered at the TACA Autism Journey Seminars is also covered on the Autism Journey Guide DVD.

  • Attending TACA events that have a registration fee: If there is a seminar or event with a registration fee that you wish to attend and cannot afford, please contact TACA! We have reserved 15-20% of all seats for families in need.

  • Ongoing support and education: Attend regular, monthly TACA meetings! Almost all of our meetings are free!

Important Notes

Keeping responsible parties responsible for your child’s program helps your family and all families. Important steps include:

Why Do Families Hire an Attorney?

WHY do we suggest to each and every new parents that the task #1 to do after a diagnosis is: “HIRE A LAWYER OR ADVOCATE?”

Many families who hire attorneys seem to obtain more services for their child as recommended by the professionals that consulted with the families. This information has been shared by parents at the TACA support group meetings. HOWEVER, THERE ARE NO GUARANTEES FOR OBTAINING SERVICES IF YOU HIRE AN ATTORNEY OR ADVOCATE!

Also, note that there are many parents in TACA who are attorneys by trade but they STILL HIRE ATTORNEYS to represent them on these important needs for two reasons:

  • Special Education law is very specialized!

  • In matters of the heart, it is hard to stay level-headed when the subject is about YOUR CHILD!

Some Math:

Consider: Home programs costs $20,000-$100,000 a year or more. ON AVERAGE, children affected with autism have a two-year or more home program–sometimes as long as seven years. Hiring an attorney for $2,000-$10,000 could be a good investment and a necessary expense when dealing with a school district and/or state agency that is not providing adequate/appropriate services for your child.

NOTE: Nine out of 10 parents in TACA are at odds with their school district. Only one out of 10 parents surveyed are happy with their school district. Based on more recent input from parents, these statistics have not changed.

However, this is a very personal choice. This decision is up to each family. It is suggested that families considering hiring a special education attorney should interview several attorneys and consider going without one if at all possible. Please remember: This is a personal choice up to EACH FAMILY.

If you cannot afford an attorney, there are other ways of paying for them. There are several ways folks are receiving funding for special education attorneys.

  1. Foundations: You have to do the research on your own. Try typing in “autism foundations, help families” or like phrases at yahoo.com or google.com. There are foundations that pay legal fees for families in need. They do exist. It takes some work to find them, but several families in TACA have done this successfully.

  2. Loan: Get a loan from your bank. Talk to them about loans regarding education for your child–similar to a low interest loan for a child attending COLLEGE. These are affordable and available.

  3. Pro-bono work: MANY special education attorneys do pro-bono work (meaning free services for families in need). Most attorneys dedicate a percentage of overall services to providing needed attorney services to low-income families. ASK FOR IT! Each attorney or firm may have different levels for qualifying for assistance. Please remember not all attorneys or firms offer this service to the community. Visit the Provider Directory.

  4. Try special education law clinics from local colleges and law schools to see about “attorneys who are learning the law” and see who has graduated a special education course. Maybe one of these professionals looking to be an attorney would attend your IEP as an advocate? Something to consider as an option.

  5. Payment terms: Many special education attorneys will allow you to pay a monthly set fee that is adjusted for every budget. Organize this arrangement PRIOR to services commencement and in writing with the attorney.

  6. Family: It is time to ask family for help. Instead of birthday and holiday gifts, the best gift is cash to help you with your child’s needs. Better yet, ask for a loan for attorney fees.

  7. Research Protection & Advocacy for Individuals with Disabilities for your state.

PLEASE REMEMBER: There are no guarantees for obtaining services if you hire an attorney or advocate! This information is only provided as a guideline to other parents that may need assistance from a special education attorney. This information does NOT guarantee that you will receive services.

Medicaid Deeming Waiver (aka Autism Waiver): Online Information

Low-Interest Loans

Education expenses from birth to college–many families look to low interest loans similar to college loans to help offset the costs for services paid for out-of-pocket. For more info about educational low interest loans, visit SallieMae.

Trusts and Other Financial Issues

Nothing related to autism is a quick fix, take the time to read and understand the options available to your family.

If your family is NEW to autism (less than two years since your child was diagnosed), we strongly recommend attending the TACA one day Autism Journey Seminar. This seminar will provide a detailed understanding of these financial options. This information is also available on Autism Journey Guide DVD.

TACA has families who travel all over the U.S. and Canada for this one-day seminar.

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