Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”
Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade. Autism knows no racial, ethnic, or social boundaries; family income levels; lifestyle choices; or educational levels, and can affect any family and any child. And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.
Autism Society of America Chapters
ASA chapters are your best source of information and support. Most chapters are volunteer-led by parents, care providers, and other professionals. ASA has chapters in nearly every state reaching out to individuals with autism and their families with information, support, and encouragement.
The AutismSource database features thousands of resources with listings in all 50 states. ASA continues to add programs, and users can recommend resources to be added by following the prompts on the site. Listings include physicians; psychologists; speech, occupational and behavioral therapists; schools; camps; training programs; government agencies; and much more.
Access Medicaid Waiver Programs
Under this program, a parent's income is waived when determining eligibility for Medicaid. Participants in this program receive Medicaid and waiver services. These programs are geared towards providing services to families who have a child living at home. It is through these programs that families can gain skills, maintain structure for their child and get a break from caregiving. Waiver services vary among states and not all states provide Medicaid waiver services. In the State of New York, there is a high demand for waiver respite and residential habilitation. Residential habilitation consists of in-home programming for individuals. Contact the Developmental Disabilities Council in your state or the Health Care Financing Administration (HCFA) to obtain additional information.
Visit our online bookstore where we highlight books recommended by our members and professionals. Please visit frequently as the selection changes often.
Designed in partnership with Job Target, our career center is here to assist members of the autism community in seeking employment opportunities and prospective employers/recruiters seeking qualified candidates to fill vacant positions.
Federal Old Age, Survivors and Disability Insurance Benefits
A Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
Supplemental Security Income (SSI)
A Federal Social Security cash benefit available to a disabled individual who warrants financial need. A parent's income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust
A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g., vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs
Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, and more. Contact the Developmental Disabilities Council in your state for additional information.
Access a Service Coordinator/Case Manager
Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. This person can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.
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