Health Care Advocacy News – July 2015

“Early intervention has been my primary interest over the years.  The ENRICH early intervention program is a model we got federal funding for initially and then continued under the Part C (Individuals with Disabilities Education Act, children birth to 3) funding here in Colorado.  It takes a transdisciplinary approach to the intervention with the families. A big emphasis is on showing parents what they can do to incorporate intervention into daily routines. That’s different from maybe kind of the standard individual physical, occupational, speech therapy that kids get under Part C.  The ENRICH model looks at assigning a primary person to work with the family so they are not getting potentially conflicting input from different people. As part of the program, we did what I called reunion videos, following up with the families 15 or 20 years later.  It was really gratifying to hear the parents articulate exactly what our goals were with the intervention: to build their confidence that they could have a family life.”

“The work we’ve been doing on the dual diagnosis. The pilot bill passed. For the pilot, they have to get all the various agencies together and agree to collaborate and provide the services and then chase the funding. It should give us an opportunity to have the agencies figure out how to break down those silos and bring funding together. The premise is you take a look at the presenting person: what do they need? do they need to be out of the home for a while or can supports be provided in-home to stabilize the situation? Then the agencies figure out who’s responsible to pay. The Mental Health Centers don’t necessarily feel like they’ve got that knowledge when it’s someone with a significant intellectual disability. For 20 years, they’ve basically been able to say, ‘We think the anxiety is due to the autism, or due to the intellectual disability, so it’s not really our problem.’ They don’t feel they have the personnel and so they don’t reach out to provide those services.”

“The evidence used to argue for early intervention comes from intervention with more at-risk kids rather than kids with significant disabilities. It’s only until recently, with all the work on autism, where there’s actual data that says with intensive intervention you can really make a difference.  Even with autism we can’t predict really who’s going to benefit from that intensive intervention but we’re making progress. One of the sad things to me about early intervention is this big move to autism.  Any child with significant delay could benefit from intensive intervention.  It’s been a huge political force. We passed a law (IDEA) that says everyone who is eligible gets early intervention.  It’s a very confused landscape.  Every state gets to set its own definition of who’s eligible. Across the states, there are 22 different definitions of who is eligible. Some say you have to be two standard deviations below (the means.). Some don’t talk in terms of standard deviations, which is the metric that academics would want to see in place. Some say percent of delay, which is not a good sound metric in terms of having a consistent documentation. At any rate, it’s all over the map. The percentage of children served is all over the map as well. Here in Colorado, I think we’re a little bit over 3%.  You’ve got Georgia that was serving less than 1%; and Massachusetts that does serve at risk kids up at like 6 or 7%. How can you make statements about the effectiveness of the intervention when you’ve got things all over the map in terms of who actually gets in?  We do know that children of color, poor kids are less likely to get into Part C.  The bar that was set by the feds for expected enrollment was 2%. Most states were serving at least that percentage so no one has the incentive to really dig down into their data and look at who is being served because they’re meeting that bar. We found that based upon your normal curve distribution, you’d expect more like 15% of kids to be eligible. What I would argue is you need to look at how you define eligibility, the percentage you’d expect to see eligible, and if you’re not reaching that percentage, you need to drill down and see who you’re missing.”

“One of the things we’ve seen over the past year is a lot more communication between the Alliance and the Behavioral Health Association.  When we started the gap project, we went to both associations and we said we want to do this and we want these local meetings jointly convened by mental health and the community center boards. They agreed.  What’s really going to make the difference is as the funding changes and there really is incentive to work together.”

“Where everything is going in terms of medicine and long-term services and supports is integration across physical and behavioral health. When you’ve got someone with an intellectual disability, I don’t think there’s real strong relationships to primary care that there needs to be. We have to really pay attention to developing personnel.  There are lots of psychologists but not many that feel comfortable with this population. In the training we do here, through our leadership education grant, multiple disciplines come together.  There could be more collaboration between higher education and the community center boards. I’d love to see more of a career ladder go into place so people could get tuition forgiveness or some kind of support to work in this field while they’re in in college.”