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.
Ex-Medicaid Service Coordinator
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?