An idea about resolving the Autism / DD Services Gap

The (somewhat) concise part:


What's one issue to lack of adult autism / DD providers?


A lack of research being done related this demographic group concerns.


How that may affect local provider availability and Evidence Based Practices being used?


Payers of services are reluctant to pay for non-EBP provisions; fewer ways for providers to be paid; fewer providers willing to set up shop w/o solid and varied payment methods.


What might be done about it?


Use fast track research methods that are preferable bottom up: action research, community based research or maybe even citizen research. Which tie into their local / regional universities for research study support (via teacher ed, psych, exercise science, etc. programs' internships and field experiences). Which use research funding methods shared between the local community partnerships (find smaller university based and community based grants which may lessen the need for federal / national funding by groups that seem often overly tied toward finding causes and cures for the autism crisis vs. funding services and supports for those living with autism / DDs). Which can support nation EBP creation efforts by getting the data generated locally back to national database stores, local methods used written up in national journals, etc.; thus, the benefit can seen / used beyond its local effect. This all to get more EBP practices being used by local providers and more local providers and provisions available (via more willing payers). And to get this all done as quickly as possible.


Evidence-based practices rooted in community partnerships--any particular area of life that the practices would focus on?


I'm not sure which local providers this research partnership idea would work on best with: likely, various transition and adult related service agencies and schools too could do bottom up research to help fill in the gap of research for this demographics area. I'd think, personally, I'd like to fill in doing advocacy training (for parents w/ students in schools; transitioning adults to whatever is next) and also job coaching for transitioning adults / adults, suppose I can see research in those areas, too. But w/ this huge lack of... research, provider evidence based practices, focus by the big research funders (Autism Speaks, others) on services research, and lastly a theory to practice 20 year trickle down period (if research is being done top down)... this "lack of providers / provisions" cliff situation isn't going away any time soon. Likewise, if part of the cliff issue is that the payers are waiting for EBPs in this demographic's interventions / supports to solidify, it is going to be long, long wait (and perhaps even a Catch 22). And, in the mean time, transitioning folks will continue to fall off that cliff.



And my not so concise thinking about it, too:


What got you thinking about this idea for closing the adult autism / DD provision gap?


This is what got me thinking about this angle of approaching the cliff (or gap). At the Interagency Autism Coordinating Committee (IACC) full committee meeting at the end of January and in their 2012 Strategic Plan, both reference the lack of research being done for the youth and adults w/in the ASD demographic area. Specifically, the IACC committee was referencing a research review done by Jeremy Veenstra-Vander Weele of the AHRQ, "Future Research Needs: Interventions for Adolescents and Young Adults With Autism Spectrum Disorders." Plus the strategic plan mentions lack of EBP being done at the community level, "While the 2011 IACC Strategic Plan for ASD Research mentions the lack of successful implementation in community settings of treatments that demonstrated efficacy in research settings, it cites no specific research studies examining these issues. Recently, a number of reports have emerged that conclude that community-based behavioral and pharmaceutical treatment implementation does not resemble evidence-based practice, and outcomes do not mirror those found in research trials (Eldevik et al., 2012; Frazier et al., 2011; Mandell et al., in press; Nahmias, Case & Mandell, 2012)."


Actually, that section ("Where Can I Turn to Services") of IACC's 2012 Strategic Plan, summarizes what should be done to alleviate this gap of services, pretty much what I'm suggesting, I think: "The recent findings regarding the lack of quality and positive outcomes of community-based care suggested an urgent twofold gap. First, autism researchers should borrow models from dissemination and implementation science to test methods to improve implementation of evidence-based treatments. Implementation science can help identify which components of effective care are the most feasible to implement in community settings. Second, quality measures should be developed to help monitor progress in improving care and outcomes for people with ASD. Research that examines the effects of specific treatment components rather than more complex comprehensive intervention packages, combined with community-based partnership research, will be required to identify which active treatment components can successfully be implemented in community settings."


But in addition, beyond the IACC full committee meeting and the Strategic Plan tickling my imagination, I also found a study, "Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory" that talked about a “fast track” research method that is bottom up in nature and whose thinking is geared toward solving this gap in autism research. So, in a way, it sort of comes down for me to just take the obvious pieces of the research gap evidence and evolving solutions that out there and then puzzle about how I might carry this out for "my" community.


BTW, I guess research is being done on the "quality measures" needs part of the "Where Can I Turn to Services" summary in the 2012 Strategic Plan. For example, Julie Lounds-Taylor is trying to shake out measuring / defining exactly what is a "good outcome" for this group of folks. She talks about her research, thus far, in a podcast (Autism Matters Podcast Number 7).


Also, I'm thinking as research folks in the "quality measures" research area get those important definitions nailed down, like the "good outcome" measurement, we'll be thinking real hard about how to "fast track" the rest of the research needed for this demographics group (it would be nice if it all had solid element of community partnership, tied in, cuz I can't see personally that research can be fast tracked in this area w/o solid community buy in and help in implementing the interventions, coming forth).



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Idea No. 250