Lately, "services" have been on my mind, through various different sources. It seems like the word itself has become a loaded one, linked to both parental relief (securing services) and parental despair (failing to receive needed services). Several days ago my local Toronto paper has published this article, announcing that the government is proposing a huge infusion of money for children on the ridiculous Ontario waiting lists (I've written about our waitlist sagas here and here) by eliminating the wait lists for direct funding. While according to the article the money would come within two years for Sophie, and as always I'm sceptical at best (my permanent state) it seems like a step in the right direction.
All the thinking about services and funding has made me reflect on the last two years, from the services angle. My husband and I often talk about how misleading the system is and how powerless the parents are made to feel. When Sophie received her diagnosis, in August of 2012, we were handed 2 giant folders. Each was stuffed with forms, brochures, handouts and places to call to "apply for services". We fumbled around (while processing the news that our child has a serious developmental disability, and caring for a newborn, and for 2 older children) and managed to fill out all allotted forms and secure all appointments and call the people we were told to call. We felt hopeful, productive, like we were on the ball. Then the responses started trickling in. We quickly realized that there was no imminent help coming from anywhere. Every agency we contacted added Sophie to a waiting list, expressing hope that she should be called up within 18 months. We also applied for funding (Special Services in the home) which we were told was very helpful, but unfortunately now was frozen, so again she would be put on the waiting list awaiting the "unfreezing" of the funds by the government. When would that happen? we asked. Lots of commiserating shrugs. While the new promise is that the funds will be allocated within two years for children and four years for adults, that's still a lot of time to fill.
However, in those two folders of not-very-helpful materials one list was sorely missing. Not one brochure or list gave any advice as to what to do to help the child while he/she is on the waiting list. This I think is a very disturbing ideology. Upon Sophie's diagnosis, when she was about 2 months post an illness and horrific regression, when she had a newborn brother in her life, the developmental pedeatrician insisted that the best thing to do is to put her in full time daycare IMMEDIATELY. We looked down at our two year old Sophie, cuddled in the nook of my arm and we couldn't justify how putting her in full time daycare now was really the best thing to do. I have cared for two older, well-adjusted children in the home. Why was it automatically assumed that I couldn't care for my autistic child and make her thrive? Yet the assumption was there, less than subtly stated.
I did what I always do when faced with a problem- I gathered all possible information, disqualifying ones that didn't make sense to me or conflicted with my values immediately. It is true, I never cared for an autistic child. All the agencies or service providers made it seem like it is beyond parental ability and thus the desperate cry for services. I decided to find out what she is really missing out on while on the waiting list and create it for her at home. So I made her a sensory diet in our apartment. I took her to playgroups, parks and rec programs and playgrounds in our community (we were out doing something every day, baby in tow). When I learned about PECS I made her a binder and labels for everything in our home. I never cried "give me services!" Instead, I asked for information. What can I do to help her? How do I do this? Where can I find this? I found out quickly that overworked, underfunded agencies can't provide you with services immediately, but all were willing to answer my questions and share information. And I took it from there. I talked to anybody who would listen about Sophie, gathering little morsels of knowledge and compiling them into a method.
When I started blogging, I read stories of parents ahead of us on the journey. As a parent of a newly-diagnosed toddler, I was just entering this world. Reading other stories, especially from parents who also took matters into their own hands was empowering. Realizing it is up to me to help Sophie, that yes, I can get some support here and there, but really I will have to do the bulk of the work myself was a turning point. Of course, Sophie then started a half-day specialized preschool which she was waiting a year for. But still, I didn't stop researching and reading what else I could do. I decided to go all out for communication, moving beyond PECS and into a complex communication app. Did I get indulgent smiles regarding Sophie's "level of readiness"? Probably. Did I start off completely on my own to prove that she can do it? Yup. Unfortunately in this system, nobody would believe that a 3.5 year old as "severe" as Sophie is capable of handling an app of that capacity. Did I ask anybody what they thought? Nah. I know my Soaps. Since I was her primary "therapist" for the past two years, I knew her inside and out and I knew what she was capable of. Would I be able to know her so well if she were in a full time daycare and doing after-hours therapy? I am not sure. I'd probably read the progress reports from the "experts" and take them at face value.
As our Facebook followers know, we had a successful meeting with an AAC consulting agency, which upon seeing Sophie clearly capable of using the app ("huge potential" was their assessment) will now give me a 12-session block of support in my home to work with me and Sophie on the communication goals we set on Friday. Their involvement will also be a huge asset in future school board battles (I'm nothing if not a realist) in regards to Sophie's use of the ipad at school. The name of their agency backing us up will mean much more than just me saying what Sophie can do. They can also send someone to provide teacher training and be an AAC liason between me and the school board. But- would Sophie have all this if I didn't get her part of the way myself, working on the app daily so she could strut her stuff at our meeting? Certainly not. Her competence sadly is not presumed, it needs to be proven.
Now, I am not suggesting at all that we withdraw services from families! I am just proposing that we empower the families while supporting the child. Perhaps a brochure listing community programs the parents can do with their child can be included in the "diagnosis package". In our city there are early years centres, parks and rec programs (including swimming), playgroups, toddler gyms, etc etc- most are free or next to free and none (that I've seen) have wait lists. The only reason I knew about their existence was because I took advantage of them with my older kids- none of them were offered to me as places to take Sophie to work on socialization, exercise, sensory therapy and the like.
Another thing we could offer parents is not just "OT sessions" but OT training. While working with the child get the parents, even the siblings involved. Use everyday-objects to engage and provide sensory therapy at home. Same with communication. Offer AAC as soon as the child is identified with a speech delay. I discovered PECS through my own research. When I asked a therapist about it, she expressed doubt whether Sophie was ready (she was). Better yet offer an AAC app for parents (this is where the extra billions in funding could come in handy). Anybody who can use PECS (which is mostly everyone) can use an app. Train the parents in its use- make the parent the leader of the child's team.
Why am I insisting the parents be central members of the therapy process? Therapy without parental participation is akin to wealthy countries "helping" poorer ones by invading them and taking over their government. The poor country becomes dependant on being managed. Since it never had to run its own affairs when it does manage to reclaim its independence, it falls apart. This method fails over and over. If parents put all their trust for their child's success into the hands of a third party, should they lose those services (because of cutbacks, aging out, etc) they are lost- because they were told since the beginning that they need "experts" to manage their child. They don't even know where to begin.
This I believe is the primary reason for the "caregiver burnout" that figures so strongly in the media. On one hand you have the tragedy model of autism. Parents are offered condolences upon receiving a diagnosis for their child and advised to find a placement for maximum hours of the day. They are not given any counselling/training/daily living tips in the early years. Nobody attempts to see things from the child's perspective or dare I say help the parents accept that they are different. Instead of working with the child's strengths and trying to take them to the next level, parents instead are urged to focus on the child's "deficits" to try to bring them as close as possible to "normal level" (the basics of ABA therapy). Needless to say, this often triggers tantrums, meltdowns and aggression which is then blamed on autism (by parents and "experts" alike) and which in turn makes parents feel they need even more services to help them cope with this child, which is getting increasingly out of control.
So in a nutshell - yes, services are important. Putting more money into helping those with developmental disabilities lead more meaningful lives is very important. Putting direct funding into the hands of families is definitely a step in the right direction. Shifting our society's perspective about autistic people and their needs is critical. Because, if the new funds are just used to provide intensive ABA therapy for more hours to more children, and not focusing on the family as a whole, not emphasizing communication for everyone, and not offering supports based on presuming competence and acceptance of the different autistic neurology- instead of perpetuating the deficits model- well, I predict that the new funding while well-intentioned will not achieve the desired effect.
|Believe they can and they will|