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Government Funding Information for Young Adults with Autism

Introduction

Medicaid

When your son or daughter becomes eligible for Supplemental Security Income (SSI) they will receive Medicaid medical insurance benefits.  Medicaid is a federal medical insurance program that is administered by the state.  It is designed to assist people with disabilities and low income with little or no resources.  The federal government funds a portion of Medicaid and the rest is paid by each state so every state sets its own rules as to who is eligible for this health insurance and what services will be covered.  Parents need to search out Medicaid providers and Medicaid will pay for doctor's visits, hospitalization, outpatient hospital care, laboratory tests, x-rays and prescription medications within certain limits.  You will need to pick a primary care doctor after the initial approval.  However, it is also possible to choose your private health insurance company as your primary insurance coverage and Medicaid as a secondary insurance.  Please note that some states will cover ABA (Applied Behavioral Analysis) services.   For further information on Medicaid and Autism Services see the guidelines provided by the Social Security Administration.

Medicare

If your son or daughter is eligible for Social Security Disability Insurance (SSDI) they will receive, after a two year waiting period, Medicare medical insurance benefits.  Medicare is a federal health insurance program for individuals over 65 years of age and for persons with a disability.  During the two year waiting period for Medicare your son or daughter will receive a modified Medicaid insurance coverage; the coverage is available only after $1,000 has been spent within a 30 day period every month for two years.  In most cases this coverage would only be beneficial if hospitalization occurs.  Medicare always needs to be the primary insurance for the disabled person; however, many individuals also have a secondary insurance for further coverage.  Medicare Part A is hospital insurance and Medicare Part B pays for doctor's services, outpatient hospital care, laboratory tests and x-rays.  Medicare Part D has numerous pharmacies at varying prices and drug plans which cover prescription drugs.  Every year at the beginning of October until December 31, parents can compare pricing of the various pharmacies and their drug coverage plans to see what plans cover the prescription drugs needed at the best price.  Medicare provides agents available to discuss drug plans.  In addition, every month a fee (currently $104) will be removed from the monthly SSDI check deposited in your son or daughter's account to pay Medicare plus the monthly fee from the designated pharmacy drug plan.  In addition, there is a $147 yearly deductible which has to be covered at the beginning of every new calendar year.

Medwaiver

The government has provided another service called the Medicaid Waivers for Individuals with Autism.  Medicaid waivers are specials services that provide Home and Community-Based Services (HCBS) currently to 49 States and the District of Columbia.  These services can be provided at any age regardless of parental income and resources.  In other words, Medicaid requirements regarding parental income are "waived".  Medicaid Waiver Services include: adaptive technology, environmental modifications, respite care, day and residential habitation and prevocational services, supported employment, family education, plan of care of support services, and live-in companion.  These services provide each family with a caseworker to help implement the program and work closely with the family.  Many parents will utilize respite care by finding a caretaker for their child which will give them some hours away so that families can enjoy a periodic "break".  Unfortunately, many states have severe financial deficits and, therefore, the waiting period for receiving Medwaiver services is long.  In some cases there may even be a "freeze" on the waiver.  For further information see Waivers. 

Related Sites

Medicaid Autism Services
Description:  Autism Spectrum Disorder and Medicaid.

Medicaid
Description:  Government site outlines the entire Medicaid program.

HHS Programs
Description:  Protect the health of all Americans and provide essential human services, especially for those who are least able to help themselves.

Medicare
Description:  Government site outlines the entire Medicare program.

Autism Grants in the United States
Description:  This site provides several autism grants available to families in need of assistance.

Children’s Aid and Family Services
Description:  Behavior support, in-home support, in addition to residential support plans are a few of many offered services.

Medwaiver
Description:  Government site outlines Medwaiver resources by state.

The Autism Society: Medicaid Clarifies Autism Services, Waiver Rules
Description:  The Autism Society clarifies autism services and waiver rules.

Books

Constructive Campaigning for Autism Services: The PACE Parents' Handbook
Description:  A practical guide for parents to help them learn how the system works both on the local and national levels to procure services they need for their child.

Autism and the Law: Cases, Statutes and Materials by Lorri Shealy Unumb and Daniel R. Unumb
Description:  Created with the law school student in mind, this textbook is a thorough representation of materials designed to aid with autism spectrum disorder in areas such as: education, health care, Medicaid, and others.

Tools

Health Insurance and Medicaid Coverage for Autism Services: A Guide for Individuals and Families
Description:  A comprehensive guide provided by the Autistic Self Advocacy Network (ASAN).

Health and Human Services Autism Support Page
Description:  This link leads to the Department of Health and Human Services, a government website with information on government support and services. This page is specific to autism and includes links to ongoing research, contacts for early intervention, and the autism and developmental disabilities monitoring network.

Autism Transition Handbook by Devereux
Description:  Applying for Social Security and Medicaid, Medicare and Medwaiver – General information for families.

Act Today
Description:  This website provides information on grant funding, which is dispersed on a quarterly basis for care and treatment for children with autism. They also grant SOS funds for emergencies, and have special funds set aside for military families.

U.S. Department of Health and Human Services: Understanding Medicaid Home and Community Services – A Primer (Medicaid Waiver)
Description:  A report was prepared by the U.S. Department of Health and Human Services and the Office of Disability, Aging and Long-Term Care Policy.

Parent Forums/Blogs

Some forums require you to sign in to Yahoo or Facebook to locate forum names.

Forum/Blog Name:  Love that Max
Description:  This blog offers 22 free grants and services for children with special needs.

Forum/Blog Name:  8 Medical Insurance/Legal/Tax Things Every Special Needs Parents Need to Do ASAP
Description:  Sound advice for every family on financial issues.

Forum/Blog Name:  Wisconsin Organizing 4 Autism Rights Now
Description:  Organization for people with autism, their families, friends and professionals to come together to work towards several financial issues including: ending waiting lists for funding, funding for services, tax credits for families, funding for research, etc.

Forum/Blog Name:  Targeting Autism
Description:  This forum discusses government funding granted to libraries so as to better serve the autism community.