1. Autism

2. Center for Disease Control
Research shows that a child needs intensive treatment programs that involve hours per week per child
The cost of treatment can reach $24,000 to $40,000 per year
Less than 6% of ASD children get assistance to help pay for treatments
According to the CDC it costs an estimated $17,000 more per year to care for a child with ASD compared to a child without autism.
For a child with more severe ASD, costs increase to over $21,000 more per year.

3. National Institute of Health Research
47% of children who receive early intervention and at least 30 hours per week of treatment lead independent lives as adults
Of those who do not 90% need a lifetime of expensive custodial care.
Treatment is primarily funded by parents.
Medical insurance is in response to illness treatment, however, because autism is not an illness and in many cases while improvements are made not “curable”.

4. DMR Autism waiver program 2005
With funding from federal centers for Medicare and Medicaid Services DMR provided expanded home and community based services of 80 low – income children with autism under age 9. Families are selected through a lottery process. Program was limited to those who were eligible for Medicaid and receive up to $25,000 worth of services per year. Under the waiver the federal government reimbursed MA 50% for the cost of intensive home services.

5. 2009 Budget appropriation
FY 2009 included 2 million in new money, but due to economic downturn, Govern Deval Patrick reduced these expenditures by 1.5 million The waiver served 20 families rather than 80. Insurance companies have traditionally declined to pay for treatment asserting that the care is not strictly medical.

6. Medicaid Waiver program update: FY2016 Eligibility
The child must be 8 years old or younger Have a confirmed diagnosis of Autism Spectrum Disorder and meet the level of care required for services in an Intermediate Care Facility for persons with Intellectual Disability child must eligible for MassHealth Standard coverage, with an income below 150% of the federal poverty level FY monies: $6,085,431 May be able to serve between families.

7. States that specifically require insurers to provide coverage for the treatment of autism.
As of December 1, 2015, 43 states and the District of Columbia have laws that require insurance coverage of autism services including: Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, District of Columbia, Florida, Georgia, Hawaii, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, West Virginia, and Wisconsin.

8. States that specifically require insurers to provide coverage for the treatment of autism.
Washington state is providing insurance coverage via a lawsuit and follow-up regulations. Georgia, Hawaii, Mississippi, North Carolina, and South Dakota had previously had no legislative coverage and added coverage via legislation in their 2015 sessions. Several states enacted legislation in 2015 addressing mandated autism coverage including: Colorado, Georgia, Kansas, Missouri, South Dakota, Virginia and Washington. Mandated coverage may be limited to specific age groups, number of annual visits or by an annual spending cap. Alabama requires insurers to offer autism coverage in certain situations. Vermont amended their law to cover treatment for early childhood developmental disorders, which includes autism spectrum disorders.

9. Home and Community Based Services (HCBS) Waiver Specific for Autism Spectrum Disorders (2016)
Twelve states currently offer a waiver specific to autism services (although they may be limited by age to adults or children in a particular state): Arkansas, Colorado, Connecticut, Kansas, Massachusetts, Maryland, Missouri, Montana, These states provide additional services specific to autism spectrum disorders via an HCBS waiver specific for autism spectrum disorders.

10. An Act Relative to Insurance Coverage for Autism (ARICA) H4935
ARICA passed in 2010, and went into effect Jan 1, 2011, requiring private health insurers in Massachusetts to provide coverage for the diagnosis and treatment of Autism Spectrum Disorder. What types of policies does ARICA cover? The legislation affects only certain types of health care policies, so coverage under ARICA depends on the type of policy you have. Private insurers, employees and retirees under the state plan, hospital service plans and HMOs are all required to comply with the mandate. Many employers have “self-funded” plans, which are regulated under a federal law and not subject to ARICA. However, a majority of “self-funded” plans in Massachusetts are covering autism treatments. Frequently Asked Questions about ARICA

11. ABLE Act Dec 2014
Victory! Sara Wolff Helps Pass the ABLE Act Signed into law by President Obama to allow families the opportunity to set up tax-exempt 529A savings accounts for disability-related expenses. Senator Richard Burr of North Carolina, called the ABLE Act “the most significant piece of legislation affecting the disabled since passage of the American Disabilities Act nearly 25 years ago.” ABLE accounts, modeled after 529 college savings plans, now require state implementation. While open to all disabilities, it was heavily advocated by Autism Speaks advocates who are working tirelessly to ensure that the programs are available to families across the county.

12. ABLE Facts
Who is eligible for an ABLE account? An eligible individual is someone who becomes disabled before age 26 and (1) receives Social Security Disability Insurance (SSDI) or SSI; or (2) files a disability certification under rules that the IRS will write. What are the disability expenses covered under ABLE? Expenses made for the benefit of a disabled individual for education; housing; transportation; employment training and support; assistive technology and personal support services; health, prevention, and wellness; financial management and administrative services; legal fees; expenses for oversight and monitoring; funeral and burial expenses; and any other expenses approved under regulations.

13. Parents can set up only one beneficiary account
Parents can set up only one beneficiary account. They can put in up to $14,000 per year. This is an interest bearing account.
ABLE will not affect Supplemental Security Income (SSI) benefits.
Only if the ABLE account exceeds $100,000. SSI benefits would be suspended but not terminated. In other words, the beneficiary of the account would not receive a check but would retain eligibility for the SSI program.
Does it impact Medicaid eligibility? No.
Would ABLE regulations differ in each state?
Maybe. Although federal law applies uniformly to all states, individual states may regulate ABLE accounts differently. Under current law, states provide different tax benefits for college savings accounts, which are similar to ABLE accounts.
Are there age requirements for an individual to open an ABLE account?
No, except that an eligible individual is someone who becomes disabled before age 26.
Where can people go to learn more?
Read more about the legislation at

14. Autism Registry
Some states are developing an autism registry to maintain an accurate count of individuals with autism spectrum disorders, as they are diagnosed or treated.
Four states: Arkansas, New Hampshire, New Jersey, and Utah mandate a registry of individuals with autism spectrum disorder.

15. More information: More information:
The ABLE Act: A Game Changer for Special-Needs Planning? 11 minute video