Useful Agencies and Support Groups For Your Autistic Child

Agencies, Support Groups at the Ready For Your Autistic Child

There are a number of agencies and resources available for people looking for supportive services for themselves or loved ones.  These agencies may be part of your county, state, or Federal governments, or they may be community-based entities that offer services funded by a blend of government monies, donations, and/or private contributions.  Here is a list of agencies to consider when searching for support.

1)     Disabilities Services Office (DSO):  There are 5 DSOs operated by the state agency known as the Office for People with Developmental Disabilities (OPWDD).  This agency and its regional offices have state provided services such as: Service Coordination;  Day Programming; Nursing; Physical and Occupational Therapy; Residential Services; Vocational Placement; Advocacy; Psychology/Psychiatry; and Family Supports.  This is the place to begin when accessing clinical supports, and the DSO oversees all other agencies that provide developmental disability services in their region.  www.opwdd.ny.gov

2)      Department of Social Services:  Each county has its own DSS, a governmental entity that assists people with getting Medicaid, Food Stamps, and Public Assistance.  Medicaid is required for anyone looking to access supports for Developmentally Disabled folks in NYS and pay for them.

3)      Social Security Administration:  Regional offices are set up throughout the state to help people obtain financial support for disabilities that prevent them from working enough to pay their bills.  Many people with Autism can qualify for various forms of Social Security benefits if they do not have anyone financially responsible for them.  www.ssa.gov

4)      Association for Retarded Children (ARC):  A Not-For-Profit organization that specializes in servicing people with a wide range of disabilities.  ARC offers similar services to what the DSO has available, but also includes community supports such as picnics in the park for families, daycare services that allow parents some time to themselves away from disabled loved ones, and recreation ideas such as camping, movies, dinners, and zoo trips that offer a fun, non-clinical approach to skill building and socialization.

5)      Enable, Inc.:  Similar to ARC, Enable provides a variety of services to give families another option to pick where they get some, or all, of their services from.

6)      Cayuga Centers; United Cerebral Palsy; Catholic Charities are other agencies providing similar services as alternate vendors for recipients to consider.

7)      Speak it!: Speak It is an advocacy group whose members are service recipients themselves.  This organization meets monthly and discusses the state of services, what needs to be changed or added, and promotes independence for all developmentally challenged individuals in the DSO catchment area.

8)      New York State Developmental Disabilities Planning Council (DDPC): a governmental entity that looks at service provision from a macro system level to analyze effectiveness, training, and hurdles impacting local agencies providing front-line support.  www.ddpc.ny.gov

Other Articles You Should Check Out,
1). Top 10 nonprofit organizations for autistic people
2). Can I get SSI for my autistic child?

Medicaid for Autistic Children

Getting Medicaid for Autistic Children

   Medicaid is an insurance program funded jointly by the state and Federal governments that provided coverage for medical care when the insured would not be able to pay for them.  Caring for an autistic child is a life-long, expensive undertaking that would tax the most financially resourceful family, but Medicaid offers a fiscal means of taking the worry over paying for care out of the equation, allowing for more important things to be focused on.  The following account details the process for obtaining Medicaid insurance in most states.

  • When a child or person is diagnosed with a disability like Autism, the first step is to contact your county’s Department of Social Services and request an application for Medicaid.  You can do this in person or by phone to have the application mailed to you.
  • The Medicaid application asks several questions to identify the person who is applying, the nature of the qualifying disability, and financial resources of the person and/or family.  Please be honest in your responses; if you hold back on reporting your financial assets in order to better qualify for assistance, you may be found guilty of Fraud, face jail time, and disqualified for any Social Services.  Forever.
  • When you have the application completed, mail or return it in person to the office where you requested it from.  At that time, you will be given an Intake appointment to discuss the application with a Medicaid Case Worker and a list of documentation to bring with you to this appointment.  The requested documentation will include: proof of disability; identification (Birth Certificate for children); bank account statements and income information of the parents; and a list of expenses.
  • At the Intake appointment, the Case Worker will make copies of these documents and ask you some more detailed questions to complete your application.  These questions will refer to the documents you bring in, so the more thorough you are with bringing in the information, the fewer follow up questions will need to be asked.
  • By law, your Social Services department has to give you a decision on your application within 45 days once all the requested information is provided.  With a qualifying disability such as Autism, your Medicaid office can expedite the application by contacting either the Coordinator of Waiver Services at the local Disabilities Services Office or the Service Coordinator involved with the child for verification that the child has been tentatively approved for Waiver services, pending Medicaid acceptance.  Once verified, the acceptance of your application is hastened to about two weeks instead of 45 days.
  • Once approved, the parent is given a Temporary Medicaid Card until the actual hard plastic card is made and mailed out.  Both cards, when presented at any location that accepts Medicaid, allows the presenter and cardholder to receive any medical service that Medicaid pays for.  All services that an Autistic child can access in New York State is covered by the Medicaid/Waiver programs.
  • Usually, Medicaid recipients are required to recertify annually to make sure they are still qualified.  However, because disorders like Autism are a lifelong disability and not a medical issue that can be “cured”, most states do not require that such recipients recertify for Medicaid benefits.  The income of the parents or other financial resources accessible to the family does not impact the application.

Let’s view one of the case scenario with service coordinator.

Top Twenty Support Groups For Autism

Autism has gained a lot of support from organizations in the past fifteen years.  Originally there weren’t that many places to go to find information, locate specialists and therapists or find financial resources to help.  Now there’s more than enough information and charitable groups who can help parents with autistic kids.

  1. AutismSpeaks:  This is one of the largest autism resource sights out there.  It currently is working on research to find the causes of autism while providing a wealth of current information and links to families with autistic children.
  2. Autism4ever:  Addresses the unique needs of adults with all levels of autism and helping families find living spaces for their children or siblings that have autism.
  3. About.com:  It seems like a strange place to find information about autism, but most of what they touch on is quite accurate information.  It’s a good place to start if you have never heard of autism prior to being told your child has it.
  4. AutismResources.com: Much like Autism Speaks, but it does have a few extra resource links Autism Speaks does not.
  5. NationalAutismResources.com :  A website that sells all kinds of therapeutic toys and devices just for parents and teachers who have and are working with kids with autism.
  6. AutismPDD.net: information site that also connects parents to autism resources by state.  Very useful if parents are having a hard time trying to find resources that are actually in the state in which they reside.
  7. Federal Social Security and Disability Income: once it’s well-documented that a child has autism, parents can apply to receive additional financial support for their autistic child(ren).  It doesn’t take more than two months before benefits begin, and as long as the benefits are used to help the child they continue.  Both state and federal benefits are awarded within the same time frame, although some are based on the rest of the household income.
  8. AutismSociety.org: Another helpful site full of information that encourages others to become members of their group and advocate for research into autism and advocate for adults and children with ASD disorders.
  9. National Institute of Mental Health, or NIMH:  A government website that helps debunk falsehoods about certain neurological and mental health disorders.
  10. YARC or ARC: Community organizations that organize activities for children and adults with special needs.  Gives everyone a chance to socialize, relax and have some fun.
  11. AutismResource.net:  A central New Jersey site that helps parents do a search for anything related to autism
  12. Autism.Lovetoknow.com:  Lists hundreds of articles and resources and connects moms of autistic children and adult children to activities and various forms of autistism support.
  13. TheAutSpot.com: A combination blog, resource center, news center, and shop for everything autism.
  14. NAMI, or National Alliance on Mental Illness:  Your child doesn’t have to have a mental illness, nor do you.  Weekly meetings in local chapters on every possible topic are a good way for parents to get out and distress while talking about the challenges they face raising a special needs child.  NAMI hosts many events.
  15. Respite homes:  locally there should be a few children and adult respite homes or adults who are specially trained and willing to provide respite to parents with especially challenging children.
  16. Sitter.com:  It is extremely difficult to get a babysitter and go out for the night if you have a special needs child.  This site screens all of its sitters and performs background checks before it allows sitters to post their services.  Parents can even do a site wide search for “ autism” and narrow the distance down to the nearest five  miles to find someone who has had experience and training in autism.
  17. The local county service provider in your area will know a lot about what resources are available close to you.
  18. Teachers are an excellent resource, especially special needs teachers who have access to a lot of resources that might not even be found online without their help.
  19. Applied Behavior Analysts who provide additional before and after school therapeutic help.  They might have one or two resources that aren’t on this list; otherwise they are a support all on their own.
  20. Your spouse or partner: While this is a long and difficult road, if you have a loving and supportive spouse or partner, don’t forget that he or she is there beside you and can take over when your child gets to be too much.