Because we had some interesting difficulties with the Autism Funding Unit, I got talking to Maurine Karagianis about the difficulties of having kids with Autism in BC. I offered to send her a parent's perspective of the system. It took forever, but here it is:
My kids: J = 15f, H = 4m, C = 1m
J - J's assessment process was a nightmare. The doctors missed it when she was a toddler, calling me a nervous mother. When she went to school, they were supposed to arrange the assessment, but "forgot", so we waited, assuming she was on the waitlist that they assured us was VERY long. That was in Grade 3. In Grade 6, we got the process started by doing some hard pushing. At that point, we were just asking for educational assessments for learning disabilities. Still no one suggested autism. After H was assessed, we talked to her pediatrician, who sent in a referral for her. That was in March of her Grade 8 year. The schools only do assessments in September, because assessments have to be in place by Sept 30 in order to get funding for the year. However, we could have gotten several extra months of funding for our use. Finally, in September of J's Gr.9 year, she had her assessment.
H - H was part of the Early Intervention Program offered by VIHA. He had significant language delays and was referred to CDBC for Autism Assessment in December of 2007. He was waitlisted, and received his assessment on February 27, a three month wait. Other than his wait, this was a positive experience.
C - C just got his assessment date. It will be about 8 weeks from the referral. This is acceptable to me. The only problem we have with the assessment process is the interview process. For 4 hours on a Tuesday morning, we will have an interview with the psychologist. Children are not to be at this interview. Because of this, only I will be able to attend, and my husband will have to take time off work to look after the kids. My husband will not be part of the process. I find this remarkably annoying. We do not have babysitting, and certainly not on a Tuesday morning.
The funding simply isn't enough. A decent ABA program is at least 20 hours per week. 30 is better. But let's assume 20 for the sake of being reasonable. 20 hours of ABA therapy = $600 x 50 weeks per year (minus holiday) = $30,000. That's without the required Behaviour Consultant, Occupational therapy, a Speech Language Pathologist, any books or supplies.
Once they turn six, apparently they're magically cured, because suddenly the funding drops to $6000/year. I understand the school system is supposed to pick up the slack, but they can't and don't. The schools do not have ABA therapy. They have babysitters. If you're lucky. J is high-functioning enough to be in regular classes, with regular curricula. She doesn't need very much intervention at school. But she desperately needs tutoring, someone to help with organization, and a good counsellor. That cannot be had for $6000/yr. It simply cannot. And the school cannot provide it.
Speaking of the schools, they can't seem to provide a safe place for my son's food allergies. Strong Start has flat out said to keep him home. If I have to homeschool because of this, where will the funding for his education come from then?
If it isn't enough that we have to shell out a LOT of money for what is essentially health care (Autism is a health issue - I'm utterly baffled that it isn't treated that way by the government), it adds insult to injury that it is slow in being reimbursed. The Autism Funding Unit is clearly understaffed, because it takes a long time for our providers to be paid, and a long time to get paid for supplies. The system requires us to get pre-approval for everything we buy - a process that usually takes at least a month. Then, once we buy it, it takes another month (if we're lucky) to get paid back.
Unfortunately, not everything needed is covered, even if we had enough money. For example, for some reason, trampolines aren't covered, even if an Occupational Therapist suggests we get it. What is most frustrating though is that the services of a naturopathic doctor aren't covered. Autism is a health issue, there is no doubt about it. Our pediatrician has flat out said there is nothing she can do for Autism. However, the ND did a number of tests, including an Environmental Pollutants Panel and and Organic Acid Test, and found a number of serious problems, all of which can be treated. But these are extremely expensive tests and treatments. The two tests cost approximately $500 to run, each time. And the visit is $90 each time as well. Our ND has been phenomenal, bringing about massive change in J. Her behaviour is markedly improved, her grades are up, and she is happier. She was also able to stop taking two prescription medications that she previously relied heavily on. But we were in a position to pay for these tests. The vast majority are not. This simply needs to be covered by Autism Funding, or by the Ministry of Health. Because of our ND, our daughter will likely be able to hold down a job. Covering naturopathic for autism treatment would SAVE the government money in the long run. A LOT of money.
There seems to be no accountability in the privately run Autism programs. I understand that there is a RASP list for providers, and that there are certain standards that one must meet to become a provider (though there are people grandfathered onto the list - people who wouldn't qualify now, and at least one of them runs a major provider in Victoria), but once they're on the list, they get carte blanche. We spent a year with a provider who was terrible - our son actually regressed in the time we were with them. There are hundreds of thousands of goverment dollars flowing into these programs and there is absolutely no oversight. It's astounding.
It is my understanding that my kids have a social worker. However, we have no contact with them. When the government changed the system back to the ministry from Community Living BC, we got a letter from each of our social workers, and had a brief meeting with them. They gave us paperwork and lists of resources we could attempt to access on our own (HA! Right. In all our free time.) I later got a call from one of them saying she was leaving on sick leave and that I'd get a replacement. No replacement ever called. I called the other and asked her to see if she could take both of their cases because it was easier to have all our eggs in one basket, so to speak, and she grumbled about caseload, but said she'd see what she could do and she'd get back to me. She hasn't. That was about a year ago, and her number is no longer in service. I have no idea how to get hold of our social workers. In fact, when I filled out the paperwork for H's therapy, one copy was supposed to go to her. I had no clue where to send it, so I didn't, figuring someone would eventually call me looking for it. Hasn't happened yet.
One of the things we asked for when we did talk to the social worker was respite. Someone to come in and look after the kids every once and a while so we could get out of the house without them. The process seems to require an interview, which as far as I know, didn't happen. Possibly, they considered one of our meetings to be an interview, I don't know. The other thing I don't know is what one needs to qualify, how long the waitlist is (I'm told it's considerable), or what I can expect if I do qualify.
In the meantime, I went to the Victoria Society for Children with Autism (VSCA) and they provided $100 for a respite worker. That was lovely, but since they lost their lottery proceeds, they are no longer able to provide any respite funds.
It is extremely expensive to get respite care. Most people charge $15-$20/hr. For babysitting. And, I might add, this is not covered by our funding. There is no wonder that 80% of parents with kids with Autism are divorced. We don't get any time to ourselves. Our kids don't sleep well, and we can't get a break. The stress is incredible. Family counselling is covered by funding for children over six, but not under. I have no clue why that is. Especially since the funding is so paltry in the over six program.