The journey to get a support worker:
How to get services when you are denied them.

By LG who lives with her two children in a trailer on the edge of a lake in northern Ontario, 50 km from the nearest city. LG and both children have been diagnosed with Autism Spectrum Disorders. 

Monday last week it finally happened. I GOT a support worker. Here is an outline of the 18-month long fight to get this happening, and how it got done, and what resistance there was along the way. 

1) When we were living in a city in eastern Ontario, I got a support worker from the Association for Community Living. Perhaps a part of that success was the fact that I had reached OAARSN in early 2000 to ask for suggestions on who to contact and what to do. One contact was a research scientist in that city who had a personal interest in autism and she helped me to get a support worker. 

2) We moved to northern Ontario and were referred by CCAC  (Community Care Access Centre, a “one-stop-shopping” centre for health care needs in Ontario) to the service co-ordination agency that decides if your name goes on a waiting list for support workers or not. 

3) This agency wouldn't accept the Aspergers diagnosis I had received in southern Ontario because it was by an MD. They felt it was not valid, and decided that they required me to see their local developmental services clinic. 

4) I went to see a “psychological associate” (who has a Masters degree in Psychology) at the developmental services clinic. This person decided that my "obvious social skills deficits, anxiety, OCDs, and self  stimulating behaviours, were due to some mental health issue other then Aspergers"…. This person considered that I could not be autistic, because I have empathy and say I love my children and because I am aware of my social deficits and behaviours. I was referred to a local mental health clinic to deal with that "other mental health issue" which caused me to look like I am autistic. 

5) The service coordination agency said that, since they only serve people with developmental disabilities, and according to the
psychological associate I do not have a developmental disability, they would close my file. 

6) I waited for mental health clinic to contact me, for an assessment with their psychiatrist. 

7) In the meantime, I contacted online agency dealing with autism in southern Ontario, and asked for names of other psychiatrists who can make assessments for autism in adult population, and discovered one in a developmental services clinic in another city in northern Ontario. 

8) When I contacted this psychiatrist through referral from my family doctor, his office sent an information package that asked for details of full life history, any supporting documentation, and also consent forms for all psychiatric involvement, as well as two tests to be filled in and sent back. 

9) I traveled by bus to the city where the psychiatrist was based. The fare was costly, about a week’s grocery budget. (We ate lots of fish that week!). The psychiatrist seemed to say immediately that he felt that I had high-functioning autism (HFA), upon reading the previous reports, the tests that I did for him, and the life history. He said that he would make a referral to the service coordination agency for a support worker. 

10) By this time, the appointment with the local mental health clinic came through. I went to see this psychiatrist as well, thinking that it couldn’t hurt to have two reports. This psychiatrist said that through he did not know much about autism, he felt that I was clearly on the autism spectrum, and that he would put a label of PDD-NOS so that no-one would think I am incapable of caring for my children alone as a single parent, as they would if he said autism. (This showed his lack of knowledge about autistics BUT he did know enough to be on the right spectrum with his diagnosis). 

11) When I contacted the local service coordination about the first psychiatrist’s report, and asked if they now believed that I had a developmental disability as I had been told in the eastern Ontario city, they said “his report does not say you have a developmental disability" (even though the report said I was on the autism spectrum). I contacted that psychiatrist’s office and told him what had happened. He wanted to see me again. 

12) When the intake worker at the mental health centre contacted the service coordination agency to tell them of the second psychiatrist’s report, the service coordination people said flatly "we only want the most recent report"…. When told that the report was done that week, they replied "we don't want it, we already have the report we want". The intake worker told me she was shocked and couldn't believe it. 

13) The first psychiatrist was shocked to learn that the service coordination said his report didn't say that I had a developmental
disability. He said "maybe they are not clear about what a developmental disability is", and that he would write another letter,
detailing what a developmental disability is, and stating that I have one, and need a support worker. 

14) When I contacted the service coordination agency the same day that I knew they had been faxed the first psychiatrist’s new letter, and had it in my email box, they wouldn’t answer. They refused to call back or reply in any form. 

15) By this time, Elizabeth Bloomfield at OAARSN suggested perhaps contacting the member of parliament (MPP) in our area, Shelley Martel. Also, two online friends wrote faxes and made phone calls to service coordination about my situation. One never got through to the executive director and the other one got a call back saying she will "look into" my case and contact me in a "couple of days". Nobody was able to talk about my case because of confidentiality reasons, but the ED agreed to look into it and contact me directly.  She also said that she was not familiar with the case, although I had written a fax directly to the
Executive Director two weeks prior, and never gotten a reply from her.  Never did the executive director contact me in those days. Not for several weeks. 

Those two online friends contacted the provincial autism advocacy organization as well as the local chapter president via email, as I had done  myself. The local chapter president said on the phone that “she has been told where to go, she can do it herself" (about contacting the service coordination to ask for a support worker). When we contacted the provincial office, we never got a response. I got a reply via email from the local chapter president finally who said that she wished me well, and it seemed that many people were helping me get what I wanted. No advocacy, or other support from the provincial autism
organization--nothing. At this point it seemed helpless. 

With the encouragement of online friends, I didn't give up. I wrote to Shelley Martel (our MPP), and the OAARSN offered to write to her as well. 

16) By the time all these people, including Shelley Martel, had contacted the service coordination agency, so they couldn't anymore ignore the issue. They decided to send a service coordinator. This is a person who will decide IF I will even be placed on a waiting list with the agency that provides the support worker.  This is the way it works now: there is one agency as the "honour guard" protecting the services from being accessed directly by doctors, agencies, or service users themselves.  This way, not even the psychiatrist or the mental health center is able directly to contact the community service agency that actually provides the support workers. Everything has to go through the service coordination centre. 

17) When the service coordinator came, she had a HUGE file about me. She had all the doctors’ reports, all the letters, faxes, and notes from phone contacts from several people.  First thing she said: "there is a year and half waiting list for support workers, IF you qualify for one". Interestingly, neither of the psychiatrists’ assessments, detailing the urgent need for a support worker was sufficient to actually GET a support worker. This service coordinator would determine if I needed one. Imagine that!! In the end, once she understood our situation, asked questions etc., she said: "clearly you are in need, I will ask to have your name `fast tracked' through the system." She spoke of the list being assessed "according to need". SO, in the end, she said
that perhaps it may take up to 6 weeks for the support worker to finally arrive. 

18) Exactly a month and a day later, the support worker arrived for her introductory meeting at our home. 

How was this accomplished despite the strong efforts to deny the support from several people? It took a consistent effort on several different fronts, by myself, private citizens, and other agencies and groups to make this happen. It’s important to know that if I had been all alone in this, I would still be without a support worker. Without the support of persons online, I would not have had the emotional resources, nor the knowledge of what to do, to be able to fight for this service. 

1) ONLINE advocacy by friends who wrote letters, made phone calls, sent faxes and emails. 

2) ONLINE group such as OAARSN offering suggestions, ideas, general support, and advocacy. 

3) Several trips to psychiatrists who knew what to say, and had the energy to put forth an effort to keep on approaching the service coordination agency despite having their expertise ignored at times. 

4) IMMENSE amount of supportive contacts online, via emails, and in message boards, where I was able to vent, write out my despair, feelings of hopelessness along the way, people who validated my feelings and didn't say "that's just the way it is, nothing can be done about it"… people who offered to go to the media with this IF it amounted to nothing in the end (if this was not going to get resolved by the time we had contacted the member of parliament Shelley Martel). 

5) Agencies involved permitting email contact with me. Without this, I would not have been able to communicate with them, and get their support. 

6) Numerous letters being written, not only by me but by several people. A file about me is several inches thick at the service
coordination agency, and I have a huge amount of letters on disc at home. This showed the service coordination agency, that although I am isolated, and don't speak well on phones etc., I have people who KNOW what is happening and care enough to DO something about it. 

7) Paper trail. This was important. Everything was saved, and every letter was copied to any person that could think of who could be involved. Although the provincial autism organization was not supportive in this process, I sent copies of all of the correspondence to them. I also started sending the copies also to the two agencies that actually provide support workers in the nearest city. The reason for this was, so that they can see how difficult it is to even GET to them, through the service coordination agency. 

8) Contacting a province wide legal defense association specifically dealing with persons with disabilities.  This was done, because these people DO at times take on cases where disabled people are denied services, and it helps to let local service agencies know that we are in communication.  This organization is called ARCH (A legal Resource Centre for Persons with Disabilities), and can be found at: 
www.archlegalclinic.ca

I hope my story will help others to overcome the obstacles I experienced on my journey. People like the psychological associate and agency staff who seemed not to know enough about autism in adults. And the service coordination agency people doing everything in their power to deny, ignore, not accept reports, and generally stand in the way of doing their job… which is to refer me for a support worker.  (By the way, my kids have been going through the same struggle with the developmental services agency. They also lost their diagnosis upon coming here. It has taken a year to acquire my son’s diagnosis back again, so that he
also qualifies for support services… but that is another story).