May is the Month for Meetings

As I expected it would be, this month has been filled with meetings. We have just one more big meeting (hopefully) coming up on the 20th, and the others have really been preparation for that.

This week, we had Moe's annual Individualized Family Service Plan (IFSP), which also served as his official exist from Early Start services. This is the meeting where we discussed the results of his latest assessments, reviewed our team's recommendations for ongoing services and discussed the transition to the school district. He will continue to receive services through his birthday, but the day after memorial day, he's cut off from his current set of services. I'm jumping for joy and trembling with fear at the same time.

As I've discussed before, it is tough to quantify a kid's level of ability based on standardized tests, especially when you're dealing with an autistic kid who may or may not feel like performing for you on any given day. So I'm trying hard to take the results with a grain of salt. That said, our team, especially our SLP and OT who see Moe every week, know him well. Their written reports are pretty accurate views of where he is now, and have given the school district (in addition to their own assessments) a good picture of where he is. In a future post, I'll try to paint that picture here.

On May 20, we have our Individualized Education Plan (IEP), which will spell out the services provided to us by the school district. That document, and the goals within it, is our contract with the school and is critical to how we move forward with Moe. All parties, including us, have to agree on what is in it, and it isn't binding until signed. Unfortunately, this can become quite a contentious process, often involving advocates and/or lawyers. So far, however, our school district has been very responsive and thorough in their evaluations. The psychologist has spent five hours with Moe, including one parent interview, two assessments and two ABA observations. Although she hasn't given me any details of their proposed plan, she indicated to me this week that her assessment of Moe is very much in line with what she read in the IFSP, as well as Dr S's latest report.

Incidentally, Moe also qualified for ongoing regional center services. They no longer provide the ABA or speech services, but do offer some assistance with things like respite care, day care, diapers after the age of 5 (Lord help me if Moe is still in diapers at 5), and behavioral consultation for specific problems that may come up over time. I hope we never have to use them.

Budget Cuts

One of our concerns when we first started early intervention (EI) was whether we could get appropriate services for Moe, given the California budget crisis. By law, California must provide appropriate services for all qualified children, but of course "appropriate" and "qualified" are squishy terms. We've been fortunate enough and pushy enough to get the right services for Moe.

At the end of January, I attended a parents' meeting with our ABA provider about budget cuts that are coming their way. I learned a number of interesting things at this meeting.

First, parents are having more and more success with insurance. It is always a fight, and often takes many months of appeals and reviews, but parents have been able to get insurance coverage for autism treatments, including ABA, speech and OT. The providers love when they do get insurance clients; they get better rates, fewer hourly caps, and can provide more services, especially with kids over 3. This is because health care providers are concerned with "quality of life" where school districts (who manage services after age 3) are only responsible for addressing issues that affect educational success. Our provider believes (or maybe hopes) that insurance is the future of autism coverage.

Second, I learned that many more parents than I realized are paying out of pocket for their kids' therapies, either entirely or to supplement what they are getting from the school districts. Many of the parents at the meeting were from an excellent nearby school district (not ours), but one that I'm told doesn't have great special ed services. I've heard good things about our school district, which doesn't contract with the center but provides their own programs. But until we see the specific program that we are offered, it is hard to tell. We're going to start looking at some of the other agencies around just in case.

Third, I learned that the Regional Centers and the School Districts are being much tougher with their definitions of "qualify" and "appropriate." Where 80% of our provider's clients used to be big (25+ hours/week) programs, 80% now get fewer than 10 hours. Their center-based program is filling up since the RCs are more likely to recommend a cheaper center than an intensive home program. This is what happened to us. Fortunately, we got second opinions and very strong hints from the center director that Moe needed more. We pushed to revise our IFSP, and we got more. But not everyone knows enough to push for that.

Of course, providing fewer services during early intervention is only going to cost the state more in the future. Kids who don't get services early on are more likely to need more help later, continued services into high school and adulthood, including job training, self-help skills training, home assistance, etc. With the rates of autism rising, this is a potentially big financial burden building for the state and the nation as a whole. But the state is not run like a business, with a long term fiduciary duty to its stakeholders. The state lives budget year to budget year, and our kids are the ones who are going to suffer. There may be a number of problems with insurance companies covering autism care, but they are savvy businesses, and likely to take a longer term view of the problem.

So far, state budget cuts have only affected my family a little bit. At Moe's latest IFSP, we had to get a denial of coverage letter for speech and OT services before the RC would pay for them. Our ABA provider has had to reorganize to brace for the cuts but our program was only affected a little bit. But as we prepare for our first IEP and transition into the school district in May, I have a feeling we're going to start feeling the crunch a lot more.

A New Plan

After we met with Dr. S, we started a small flurry of activity to try to get Moe some one on one therapies. We found out that the regional center (SARC) office has their staff meetings on Thursdays so we wanted to make sure that we got on the agenda for that week.

First, we had to fax the doctor's report to our service coordinator (SC) at the Regional Center. Second, we had to make sure all of the reports and recommendations made it to the regional center by Thursday's meeting. Moe had already been observed by the occupational therapist at school. A speech & language pathologist was also going to see Moe. We had to make sure that their reports, as well as the school director's recommendations, were completed and faxed to the SARC. It turned out that those reports were not actually going to be ready in time, but we encouraged our SC to make sure to discuss Moe at the meeting. They did.

As a result, the regional center sent their own psychologist to observe Moe at school. That happened on Monday. We had a phone call to review yesterday.

Everyone had talked to everyone else (including our Dr. S and the SARC psychologist). They agreed that Moe should have more individual treatments, so now he is going to have one hour per week of speech & language and one hour of OT. In addition, we are going to start sending Moe to the school 5 days a week.

We are hopeful that the one on one therapies are going to be really beneficial, espeically in helping Jeff and I know what we should be doing at home. Our only complaint about the learning center has been that it has been difficult to get a lot of feedback on how he is doing, and where we can be helping, so I'm looking forward to having a relationship with the therapists who will be working with Moe.

Our concern with the new plan (called an IFSP) is that Moe is only getting 2 hours a week of one on one time. Dr. S seemed pleased with the changes, but was a little vague. SARC agreed that if the therapists think he needs more, they can request more. In addition, if Dr. S does give an autism diagnosis, then more changes can be made.

So what's next? I'm working with SARC to get the new plan scheduled. We have our next appointment with Dr. S in 2 weeks.