Autism Service Coordinator

Where to Turn:

Searching for Supports When Autism is Diagnosed

   “I don’t know, hon.  I think we need more than what the school can offer”

“But, they ran all the tests and came up with the results.  They’ll know what to do, right?”

“It’s a small school trying to stay afloat with all the budget cuts.  They may need help too”

“Ok, but if not them, then who, and where?”

Like any other medical diagnosis, families who just found out their child is autistic have many questions and a need for answers to come quickly and are of high quality.  Does the school system take the lead in care or a private psychologist?  Does my child stop going to Head Start and start attending a “special” school instead?  Where are these schools and how do I get my child there and back?  How much this will cost us and will our insurance company fight me every step of her care?  Do I need to get a physical therapist or counselor involved, or both?  Who has answers for us?

As worrisome and mind boggling as these questions and the search for answers can be, there actually are a number of services in place at the state and federal level to provide guidance, hands-on skill teaching, and all-around support to the child and the family members.  The real key to finding, and keeping, supports is to have someone who can find, access, and maintain supports in a coordinated fashion.  This service is where we begin.

A Service Coordinator is a person who helps clients and families locate services and navigate the often confusing red tape to prove service eligibility and make sure those services will meet the needs of the person.  Sometimes titled a Case Manager or Social Worker, these professionals usually work for state or private, not-for-profit agencies that offer an array of services under one roof.  In New York, the state agency that provides and oversees these services is the Office for People with Developmental Disabilities (OPWDD), which has regional offices called Developmental Disability Services Offices (DDSOs.) Other states may have entities with different acronyms, but their goal is still the same; to provide and oversee services provided either by them or by private agencies that contract with the state to provide similar resources.

I was a Service Coordinator for New York before taking my current administrator position.  My job was to be an advocate for the family and a liaison between the family and service providers to break down barriers to service provision.  I met regularly with families to identify needs and assess how well services were meeting those needs.  Sometimes, I would come into the picture from the very beginning, helping families to obtain state insurance (Medicaid) that would pay for an array of services known as Waiver Services.  Often, the school system or a private professional would take care of that part, but would need my knowledge of state and community resources to connect families to additional supports.  Once services were in place, my role was to be the hub of a wheel that had services arrayed all around and make sure that the spokes that connected me and the family to those resources did not splinter or break.

Waiver Services, which I mentioned earlier, is a collection of varied services that a person, child or adult, with a qualifying diagnosis can access all at once.  Autism is a qualifying diagnosis, as is Mental Retardation, epilepsy and other neurological impairments, Downs Syndrome, and a few others.  Focusing on Autism specifically, an autistic child is going to need speech pathology to strengthen language and vocalization, physical therapy to develop fine motor coordination, occupational therapy to create environments at home and elsewhere that supports an autistic child’s progress, and a psychiatrist to monitor mental progression and prescribe medication if it is deemed helpful.  All of these services can often be found within one location, but the Waiver program has built-in portability, meaning a family can pick and choose who provides services for them, within a local catchment area, wherever they reside.

There are many other resources available when someone is Waiver eligible.  Because autistic children are diagnosed during infancy, or almost certainly by age three, school programs such as Head Start and child care services such as Pre-K or daycare are often involved with the child at onset and/or discovery.  Honestly, how severe the autism is, and how resourceful the school can be, determines whether the child can still be supported by them.  There are indeed specialized schools that teach, train, play with, and love autistic kids, providing a designed environment with high structure and forms of stimulation to improve cognition, attention, and social involvement.  In Utica, NY, the Kelberman Center is one such school that serves autistic children, and is a model of dedication and success.

There are many community based services that support autistic children, too.  I know of two agencies that offer pony rides for autistic kids and petting zoos designed to encourage the child to interact with their world via friendly animals as a motivating conduit.  What better pairing exists than a young boy or girl and a fuzzy, unassuming animal to draw them out of their shell?  “4 Paws for Ability” is a national entity that does just that.  Parents have formed their own organizations, meeting for play time with their children to exchange ideas, resources, and offer mutual support.  For autistic adults, there are a number of site-based programs that offer all kinds of services such as skill training, work skills development, socialization, and community activities.  Referred to as Adult Day Habilitation programs, or Day Habs, these sites offer adults a safe, learning environment to attend during the day, whether they live with family or elsewhere.  I am currently the administrator for one of these locations.  For adults and families needing housing for their loved ones, group homes called IRAs (Individual Residential Alternatives) provide 24/7 support with trained staff.  Autistic people usually qualify for Social Security benefits, which covers the cost of this type of housing while Medicaid takes care of all medical expenses.

The National Parent helpline is an entity that provides resource and contact information on a wide range of supports, including Autism, for parents residing in all 50 states.   www.nationalparenthelpline.org is a comprehensive one-stop guide for anyone looking for support.  Your county’s Department of Social Services can guide you to needed services as well.  Resources are out there for every need and every one;  you just have to know where to look.  Good luck!

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