Autism Large Group Meeting Notes
April 10, 2008
Deb – Introductions
Announcement July 1 Permanent Center
45 faculty and staff
Steve – funding announcements
University $ – 3 years commitment and review
Pyle grant – interest, leverage
Deb – current grants $9.3 annual funding
Linda – Autism Training Program Grant - SRS Contract
Level the playing field – basic skill set and how to get resources for people working with kids, different levels of training for Autism Waiver
KS – Autism Waiver – in-home supports for kids with ASD – access to autism specialist (define on SRS web site), IIS 25 hours/week – across settings – collaborative with schools – home and school (get def. on web site). We have history of being at odds – but Task Force tied to working with kids – not field
Respite
Parent Support and Training Provider – brings to table parent experience and can receive compensation for this
All will be trained to various levels.
Allow access to content to access across state – on-line instruction, pre and post-test, experiential – with child at KUMC under supervision
Evaluate program – skill fluency measures – implement and track.
Track child progress over time – actually accelerating.
Training grants 50-50 split – if has done that could only supply services to people under autism waiver
Worked for 60-40 split (KU 60 percent) – trying to foster interdisciplinary training for impact – see grant for contributed effort
First training April 21
156 providers in one year – only about 50 to come to us for follow-up. (ask Linda)
Great example of cross-campus collaboration.
KC Young Matrons - K-CART as beneficiary
We have been accepted as beneficiaries of Magic Ball - $70,000 – set of DVDs
Autism Connections
Want to identify space at KUMC for social skills training, very interested in promoting improved services – several have children with autism
Bui l ding our Endowment – Dale
Method for fundraising
Feasibility Study
Case statement
Show KU contribution
Prospect ID – with volunteers from KC to id and suggest what people may be willing to give
Then build “gift table” - - See handout for details
We have five years of initial funding – so that’s our timeframe for now. Steve
Dale – activities to make contacts
Will be customizing requests for funds – will call on KCART members for expertise, maybe to make calls, Dale will do the asking.
Some aspects of center will probably be funded more than others. People will want to support what they want.
Case Statement – Take look at it. Email ideas to me (Karen)
Matt – visits to other Autism centers (6 centers)
Common themes: Named center – big donor – lots of endowment and very diverse.
Started with children and going toward adult services, transition.
All provided clinical, diagnostic, behaviorial, social skills, informal friendship groups.
Research component layered on top – vehicle for bringing in research participants.
Don’t rely on insurance services for budget.
Not just focus on ASD, but broaden to all DD.
Workshops to state
Big overhead for clinical – speech and OT – use for interdisciplinary work and students rotated through – contracts with schools outreach.
Broad training – police, EMTs
Many were LEND and UCDEDs – education and outreach building.
Except for Marcus – research was a bigger component than training.
Costs a lot to build a building. Ex. Mind Institute $43 million.
Tack on $200 facility fee for private pay patients.
States give money to autism centers. Ex. Mind - $6 million - have line items in budgets – can get cut.
Matt – Act Early – Region 7 – plans to implement CDC initiative.
CDC – National data - family practice and peditatricians – family practice were terrible – no early screening, not validiated, etc. We have long way to go.
Priorities
Funding – how to get kids into service
Screening – devices like M-CHAT instrument (over identifies) group will talk about screening; a concern is if we had a good screening tool, could you get kids into services? Or would you have to work with diagnostic team?
Diagnostic services– Wichita – one year, Children’s Mercy – one year, KUMC – August, Sept. so 5-6 months
Building capacity – could we expand model of diagnostic teams – we will do workshop late July - early August to train them to do (?)) identify physician locally and teach team to gather data and physician to interpret data
Thurs. April 17 – Web cast will be talking on that.
Legislative Task Force
Worth keeping eye on – insurance companies – autism is exclusion in most policies – even related conditions such as seizures, if relate to autism, will disallow.
Part of task force is to work on this problem. Working on non-exclusion rules. Call your legislators – now tabled to sub-comte.
Pushing legislature – fund everyone eligible Medicaid Waiver – total of 100. Best to hope for. 133 children on waiting list – had funds for 25. After cut-off date – families quit applying. Important to spread word to families need to apply so legislators will see huge need for early intervention. 33 kids on list will not be funded. KUMC sees 250/year.
Disparities in expertise rural Kansas – teachers and allied health.
We proposed to provide scholarships to those willing to serve underserved. Got into teacher training bill. Would have scholarships esp. for autism. We train them so well, they leave state. How can we disseminate curriculum – certification and how used in Kansas. Paraprof. Training. Not trained well.
What are empirically-validated practices - we see people on strange therapies and they are paying a lot. Asked to use Vanderbilt and others on what is validated practice?
Centers on blue handout.
Other news – Deb
Planning Training Events: Opportunity to secure money for day-long conf. in case we wanted to write for that. (Kathy Olson, from Parsons) Outreach Partnership Grant (see handout from Kathy Olson) In Parsons – did one on Autism in Parsons 90 enrolled, 90 0on waiting list. Parsons would be glad to do this by April 30.
Global Communities of Support – Deb
National group - in think tank mode
Cure Autism Now rep
Mission – gather info about young adults – residential living, employment
Securing 5 sites around country to help with this initiative. Est. national priorities, best practice with goal to influence public policy. Deb said we would have a conversation – maybe with Thompson Center.
Program sponsors – each must raise $50,000. Teleconf. 2009, Nat’l Conf. 2009. May be calling on some of K-CART.
Family Services – gathering information for web site – Autism Speaks
John – Pilot Discovery Grant – spend some part of KU capital in generating new projects in very low five figures. New people to come into area, pilot data for further funding, Expand breath of center. Seed money to collect data for particular grant program. NIMH – novel grants – not a generic paradigm. Started in fall. Looking for proposals to come in early mid-July – like GRF format.
Steve – we anticipate this to continue for duration. Ideas can be refined and push forward and we will do this as well.
Carey Savage – plan to give feedback?
John – yes. Will form committee to evaluate.
Space – Deb
Some at JGCP, grants at KUMC, at LSI, Edwards campus – will give us free use of couple of offices, work cubes in Regents center. This is how we want to portray for potential funders.
Web site - Karen
Tour – ask for non-LSi projects for portfolio
Look at investigator list – and send other information
Deb - Priorities for K-CART
Last fall’s priorities from the work group member surveys:
1. Conduct research to find effect. Treatments
2. Translate to training
3. Lifespan perspective
4. Network of service
Our lifespan approach is unique to Kansas – see slide
Need to build on that.
Summary from case statement (see slide)
Can expand neurobehavioral basis
Etc.
Eva – Spec Ed ucation Department tentative approval for faculty senior level position expert in autism. Recruitment will begin in fall – bringing in Fall 2009. Spread the word.