How A Service Coordinator Help – “Case Scenario From NY”

A Personal Perspective on Linking Autistic Children

 To Community and Governmental Supports

A Service Coordinator serves as the first and foremost access point for Autistic people and families to obtain services. The actual responsibilities of an SC are many and varied, making him a Jack of All Trades and a Master of Many of them, if you will. A Service Coordinator first identifies what the needs of a person are and does so by reviewing referrals, consulting with anyone who is already providing services, and of course meeting with the person and/or the involved family. Armed with information, the SC identifies resources in the community, regardless of source, that can match the needs of the person.

Secondly, the worker facilitates access to these services by making phone calls, providing eligibility documentation, and even accompanying the person and family to appointments with other support agencies. Thirdly, the SC maintains contact with the agencies and the family to monitor how well services are working out and what might need to be tweeked to make those services more beneficial. A Service Coordinator, in all, is a facilitator and guidance counselor, helping families get started with services and insuring that the services are meeting their needs. Families are often uneducated and confused about what to do when such a diagnosis is made, and it helps them to be able to go to and talk to just one person, at least initially, to help them navigate the pathways to care.

Today, I would like to share an actual experience I had helping a family gain Autism supports for their three-year-old little girl.

I received a written referral from the psychologist of a local school about a young lady we will call, “Amy”.  Amy was age three and attending the Head Start program, two years away from when kids normally start Kindergarten.  Amy has just been diagnosed as Autistic and her parents had been informed of the news recently.  The school also informed Amy’s folks that the school district would not be able to support Amy’s care and education with resources available, and recommended that the family seek services from the Disabilities Services Office (DSO).  The DSO is a regional office operated by the Office for People with Developmental Disabilities, which operates five such regional DSOs across New York State.  As a Service Coordinator for one of these DSOs, this is how I became involved with Amy.

Upon receiving the referral, I contacted Amy’s mother to introduce myself, review the latest developments with Amy since the referral was made, and to schedule an appointment at the family home.  I always made a point to schedule as many meetings as possible at the home, particularly the initial appointments, so that I could interact with the child/person being referred and get a sense of the home environment, which plays a key role in a person’s success or setbacks.

It was clear from the first few moments of our introductions that Amy’s parents were grateful for a professional to be assisting them and also nervous about what the road looked like for them and for Amy, from here on out.  Amy was there, a beautiful little girl with blond hair and blue eyes who seemed content on spinning around in circles.  I would learn later on that she really liked French fries and ice cream.

I began the meeting with Amy’s parents by asking what other referrals for supports had been made so that I knew if any threads needed to be followed up on by me.  I then talked to them about the nature of Autism and assured them that a plethora of services was out there to help them and Amy.  This news, most of all, seemed to quell some of the parent’s anxiety and helped them realize that they were not alone.  I made sure to listen to their fears and experiences, field all of their questions, and then come up with an initial game plan.

The first task we needed to undertake was to get the family qualified for the state insurance plan known as Medicaid, which a person or family must have in order to qualify for services that the DSO or other overseen agencies provide.  Having Medicaid open the door to a wealth of supports that are grouped together and classified as Waiver Services (The word “waiver” means that the cost of supportive services and responsibility for payment will be waived by the state and paid for instead by Medicaid).  I will go into greater detail about getting Medicaid in a subsequent article.

Now, we had to figure out what Amy’s needs were and contact agencies to begin the referral process.  In New York, the state provides an abundance of services but also provides oversight to non-profit agencies that offer similar or varying services as well.  A person receiving Waiver supports has a choice of which vendor they want services from, and can mix-and-match as they see fit.  Amy’s immediate need was to enroll in a school-like environment that did have resources tailored for Autistic children.  Therefore, I made a referral to the Kelberman Center, located in Utica, NY, and got Amy enrolled.  To this day, I believe Amy rides a small bus to and from this school still.

I mentioned earlier that I prefer to see the home environment as often as possible during meetings with families.  I took note that Amy did not have a fence lining the perimeter of her backyard.  Amy’s Mom stated that Amy was very active and full of energy, but would run anywhere and anywhere, unaware of the dangers of running into a road or going into the woods on some adventure.  Since exposing kids, especially Autistic children, to new experiences and stimuli is so important in expanding their cognitive functioning, Amy needed a place to run, but run safely.  By accessing the Environmental Modification program (E-Mod), I was able to secure funds to have a fence put around Amy’s home with a gate lock that Amy would not be able to reach.  Amy’s mother shared that Amy liked to ride horses and that this activity was one of the few things that held her attention.  In response, I found out that the ARC agency had a horseback riding group every Saturday mornings.  A few calls and a faxed form later, and Amy was riding horses and getting ice cream to boot!

Getting Amy that fence and the riding lessons are really great examples of what a Service Coordinator’s philosophy should be; listening to parents and clinicians identify needs, then using resources and all kinds of communication channels to meet these needs, regardless of hurdles in the way.  Much like a sports agent, a SC strives to get the best “deal” for his client, making whatever calls and providing whatever documentation or transportation needed to make it happen.  I continued to work with Amy until I took a different role with the agency, but I will always remember the blond-haired, blue-eyed girl spinning around, eating her French fries, and living a life as rich and full as possible.

Written By,
Keith Havis,
Ex-Medicaid Service Coordinator
Program Administrator

Related Articles:
1). What is Autism Service Coordinator?
2). Can I get SSI for my autistic child?
3). Can I get paid to take care of a relative with autism?

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!