1. Statewide Awareness Campaign. The Task Force discussed the idea of a statewide awareness campaign (potentially along the lines of First Steps) that reaches out to everyone, not just doctors.

1. Distribution of Educational Materials. The Task Force discussed recommending funding for greater distribution of FAQs/filers/brochures to day care centers and posting on the Department of Health’s website. This was part of a discussion to develop a statewide awareness campaign.

1. Mandate Follow Along. The Task Force discussed recommending a mandate that every county has a standard screening and follow-up program, either using the Follow Along program or something similar. This recommendation would attempt to reduce inequity in services between counties.

1. Service Coordinator. The Task Force discussed recommending the implementation of an autism service coordinator for children ages 3-5 who have been diagnosed with an autism spectrum disorder. This person would potentially work through the Department of Human Services.

1. Systems. Renae will be working on developing a recommendation relating to coordinating/planning/sharing services and funding with in the systems.

1. Physician Screening. It is recommended that every child in Minnesota have access to a primary health care professional for establishing a medical home. Within this relationship, it is recommended that each child receive developmental surveillance and screening throughout early childhood for all developmental domains, including autism spectrum conditions based on American Academy of Pediatrics guidelines. This should occur within routine health care maintenance as well as whenever a parent or provider concern is raised. These activities should be coordinated with tracking and intervention services within the local community.

1. ASD Council or Commission. Establish an ASD Council or Commission that meets at least 3-4 times a year to review and continue to coordinate all services provided by the state. The Departments of Health, Education, Human Services, and Employment and Economic Development must be represented. The group will develop a long term strategic plan, working to maximize existing services and identifying unmet needs.

1. Pediatric and Family Practice. The Autism Task Force recommends to the legislature that all Pediatric and Family Practice residencies located in Minnesota provide their trainees with didactic and clinical exposure to normal and abnormal childhood development. That, specifically, the understanding of the presentation and natural history of Autism Spectrum Disorders should be an expectation of graduates of these residencies. Appropriate topics in the curriculum should include: screening tools, associated medical conditions (and their presentations), treatment modalities and presentations of available community resources. In addition, recommended guidelines from the AAP for both developmental screening/surveillance and Autism Spectrum Disorders should be a part of that curriculum.

Next Meetings:

Tuesday, September 14, 2010

6:00 pm

Location: TBD

Tuesday, October 12, 2010

9:00 am

Location: TBD

Date: Wednesday, November 17th

Time:  7 to 9 p.m.

Location: Autism Society of Minnesota, 2380 Wycliff Street, Suite 102  St. Paul MN 55114

Learn how a supplemental needs trust and specialized estate planning can help you ensure that your child’s guardian will have the financial resources to take care of your child. Learn why failing to plan for the future can disrupt just about every aspect of your child’s life. This information concerns kids on the spectrum regardless of age. The need for guardianship and how to become a guardian will also be covered.

Can’t attend but would like the materials? Please send an email request for information on planning for the future to: info@autismlawcenter.com

My son was once severely affected by autism. His IQ was below 50 and I was told he would probably never talk. I was told he would have a life time of a very high level need for supports and services. But now Mac does so much that seems so normal. We have wonderful conversations and he is able to share amazing thoughts that illuminate his unique perspective. He and his twin sister play and argue and laugh. He has friends. His IQ has increased 58 points (For real! This is based on annual evaluations from an independent neuro-psychologist). When I left for work this morning, Mac was pretending to cook chicken and biscuits for his stuffed animals (gluten-free of course).
So, while not able to hide my skepticism, I was willing to try the wrist watch program.

At my next parent training session the senior behavior therapist explained the program to me in detail. She reminded me what behaviors to look for and that I should remove the watch at the first sign of one of the targeted behaviors. My job was to put the watch on his wrist and say, “ok, you are wearing the watch. I want to see you behave like a big boy.” Then I was to play normally with him. If he lasted a minute without any of the targeted behaviors, I was to award him five coins.
The coin system is a method of reinforcing positive behaviors that we implemented a few weeks ago. Mac is awarded coins frequently for positive behaviors, as well as for the absence of negative behaviors. Mac can then cash in coins for prizes such as ten minutes of playing nintendo Wii (20 coins) or a new hot wheels toy (100 coins). This coin system was a necessary precursor to the watch program. It is amazing, by way. We use it for Mac’s neuro-typical sister as well and I highly recommend it for all kids.
Well, the first time I put the watch on Mac’s wrist, he buzzed his lips within a few seconds. I didn’t react. I missed it. The senior behavior therapist jumped in to remove the watch. I tried again a little while later. Mac picked his fingers while I was busy making a car go through a loop-d-loop (so I missed it again). The senior behavior therapist jumped in again. After one more try we discontinued the effort rather than risk engraving a pattern of error (in me or in him!).
I was leery of running the watch program on my own, so I waited until my next weekly parent training session. I asked how this program was progressing for staff. The senior behavior therapist told me that staff was up to ten minutes.
Ten minutes blew me away. Ten minutes with no stims? No finger picking? No clucking? No chirping?
I took the watch and placed it on Mac’s wrist. I said, “let’s act like a big boy now.” We continued dressing up his stuffed animals in doll clothes from his sister’s room. I tried to focus on watching for the targeted behaviors. After a minute I took off the watch and told him, “good job acting like a big boy.” I gave him five coins and he said, “wahoo!”
And now I believe in the watch. In my mind  I call it the “magic watch.” Eventually Mac may be able to self-regulate without the watch. But if he needs to wear it while he is at school to help him attend to his surroundings and do the same level of work that his peers are doing, well I am fine with that. In fact, I think it would be wonderful.

Michelle Silvester, an autism mom extraordinaire, launched a new television program dubbed “Autism Inside & Out.” The first episode features pediatrician Dr. Allison Golnik and nuero-psychologist Dr. Robin Rumsey. There is also a legislative update from Amy Dawson, as well as some tips on cooking GFCF featuring grass fed beef and berber spices (definitely my favorite part!). The episode airs tonight (July 19th) on North Metro TV Channel 15 and is available to view anytime at www.northmetrotv.com.

Many families are shocked when they learn that their private health insurance does not cover medically necessary care for autism. In Minnesota, children who have autism currently have limited options for affordable access to medically necessary care and treatment for autism. One of those options may soon disappear.

One option is Medical Assistance – which is available to all children who have a disability. This program is often referred to as “TEFRA” and requires that parents pay a percentage of the annual adjusted gross income (AGI) as a parental fee. (I like to call this a progressive tax on families who have disabled children.) Many families enroll their child with autism in MA-TEFRA in order to obtain coverage for Personal Care Attendants, or to access waivers, or to augment their private insurance coverage.

Another option is the Minnesota Comprehensive Health Association (MCHA). Until September 24th, children in Minnesota can enroll in MCHA by obtaining a “denial of coverage” when they apply for an individual health policy for their child who has autism. Many families have enrolled their child with autism in MCHA because it covers intensive early intervention behavior therapy — an effective and evidence-based treatment for autism. Most children will not have access to MCHA after September 23rd of 2010. The reason for this is that after September 23rd, health insurance plans will no longer be able to deny coverage to a child based on pre-existing conditions. Since children will not be able to obtain a denial of coverage, they will have a more difficult time accessing MCHA.

The good news is that since health insurance plans will no longer be permitted to deny coverage to children with autism who apply for an individual policy, savvy families should be able to pick and choose the right policy for their child. The trick is to find out which insurance plan best covers the treatment your child needs. Once you determine the best plan, you should be able to apply for that plan for your child (after September 23rd) and he or she should be able to get that plan at the current rates. Of course, how things should work and how they will actually work may depend on how health insurance companies “interpret” the new laws — and on how aggressive state and federal regulators will be in enforcing the new laws.

The AALC has donated 125 two-hour passes for kids!

A free two-hour pass to the rides at Nickelodeon Universe will be awarded to the first 125 children registered to attend the Kick-off event for the MN Walk Now for Autism on July 31st.  Click here to learn more.

The event will be held at the Mall of America on Saturday morning, July 31st from 8-11:00 a.m. See the MINNESOTA_KICKOFF Flyer. Nickelodeon Universe will open 30 minutes early so that our children can become acclimated before the general public is allowed to enter. The Autism Advocacy and Law Center, LLC is proud to partner with AutismSpeaks and Nickelodeon Universe to bring you this opportunity for free rides at the Mall of America and to learn more about the Minnesota Walk Now for Autism.

• Currently between the ages of 8 and 17.
• Diagnosed with ASD before age of six.
• Do not currently meet the criteria for ASD, and have significantly improved since their initial diagnosis and are able to function in a classroom setting with minimal or no support.

Travel costs to Bethesda, Maryland; accommodations; and compensation for time is provided by NIH.

If you are interested in participating in this study or would like to learn more about it, please contact Dr. Black at AutismOutcomeStudy@mail.nih.gov or call (301) 435-6205.

In June 2010 the IACC issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/.  Responses will be accepted until Friday, July 30, 2010.

This post is a reprint of an email sent by the IACC on July 12, 2010.

Thanks to the advocacy efforts of parents family and friends across Minnesota, children who have autism and other disabilities will continue to be eligible for the state’s high risk insurance pool called the Minnesota Comprehensive Health Association (MCHA). We will have to remain vigilant against efforts to prevent children with autism from accessing MCHA. With increased grassroots efforts next year, hopefully we will pass legislation that will end the six-month wait imposed by MCHA on all children who have autism or other pre-existing conditions.

The Autism Healthcare Protection Act
Autism insurance reform gained a groundswell of support in the Minnesota House and across the disability community. Hundreds of phone calls, emails and visits from parents, friends and family have persuaded most legislators that autism is treatable and that insurance plans are unfairly discriminating against individuals who have autism. Unfortunately, our grassroots effort was obviously too little and too late. The Act did not pass this year. We ran into a brick wall in the conference committee process — a brick wall composed entirely of Senators. To overcome this opposition we must increase our grassroots advocacy tenfold!
We have, however, accomplished an incredible feat: most legislators now understand that autism is treatable and that our kids can get better! Now our task is to convince a few influential Senators. To do this, we will need to crank up our grassroots advocacy efforts. This year we generated hundreds of contacts with legislators — next year we must generate thousands!!
When I started this work more than two years ago most legislators had no idea that effective treatments and therapies exist for autism. Now, many are convinced that children who have autism can improve tremendously if they have the opportunity to receive effective interventions and treatments.
By the end of the session, much of the Disability Community rallied around families affected by autism and worked to help spur on grassroots advocacy. I am especially grateful to the Arc of Minnesota and the Arc Greater Twin Cities for their support and for sending out action alerts to their members urging them to call their legislators. The Autism Society of Minnesota also endorsed the bill and sent several action alerts to its members — thank you!
As more and more of the Disability Community in Minnesota join the effort to improve private insurance coverage for individuals who have autism, our chances of passing the Autism Healthcare Protection Act increase exponentially!
Many thanks are also due to AutismSpeaks — for its ongoing encouragement and support since this effort first began in Minnesota. Thank you AutismSpeaks!!

I am very hopeful about our chances to pass this important legislation next year because of the outpouring of support that came from the Disability Community and from parents, friends and family across Minnesota. If we can increase this support and strengthen out grassroots efforts, than surely we can convince a few senators to get out of our way!
Home Nursing Care
The legislature did approve legislation that will require private insurance to cover private duty home nursing care. This will help many families who have children with special healthcare needs.
PCA Services
Harmful legislation that would have further reduced PCA (Personal Care Attendant) hours for individuals with disabilities was averted. Many families are, however, reeling from the changes made in 2009 to PCA services which resulted in hugs reductions in PCA time to individuals who have autism and other behavioral challenges.
The most important change this year is that an individual PCA is not permitted to work more than 275 hours in one month. This equates to 9.16 hours a day for a 30 day month.
Parental Fees
Once again, the good news is that it could have been worse. A proposal to add $6,000 a year to parental fees for families above 525% of the federal poverty guidelines was changed at the last minute — thanks to effective advocacy work from the Disability Community. Parental fees will still increase, but the increase is based on a gradual sliding scale rather than a cliff.
Here is the new sliding scale, based on a family’s Adjusted Gross Income compared to the federal poverty level:
100%-175% = $4/mo. parental fee
from 175 to 525% = sliding fee scale 1-8%
525-675% will pay 9.5%
greater than or equal to 675% and less than 900% = sliding scale 9.5% to 12 %
equal to or greater than 900% = 13.5%
Parental fees are basically a progressive tax on families who have children with disabilities. The 2010 legislature had few if any qualms about raising these fees, however.
What is next?
The budget deficit next year is projected to be nearly twice as much as this year. Where will cuts be made? Children’s mental health, PCA services and parental fees will all be on the table once again. Insurance plans will also continue their lobbying efforts to prevent children who have autism from receiving the same insurance coverage that is afforded to other diagnosis and conditions.
We must work together to avoid devastating cuts, further increases to parental fees, and ultimately, to pass the Autism Healthcare Protection Act.
What can you do now?
Build relationships. Every legislator is up for re-election this year, and the next Governor will have the power to make incredible changes to healthcare in Minnesota. Please get involved. Volunteer to help door-knock, make phone calls, or host a fundraiser. Talk to your chosen candidate about autism and your own family’s experience. Tell them that it is important to you that the Autism Healthcare Protection Act pass next year and ask if they will commit to supporting it.
One person is needed to bring about change — you. Your help is needed for every child diagnosed with autism — because there is so much to do and so little time to fail.

The Autism Healthcare Protection Act did not pass — it was blocked by the Senators on the omnibus health care conference committee despite a huge outcry from the Autism Community and the Disability Community in general. Many parents, family and friends contacted and visited their legislators this year in an effort to pass legislation that would require private health insurance to cover all evidence-based medically necessary care. The outpouring of support was fantastic, but alas too little too late. Our grassroots effort has grown exponentially and we are now stronger than ever. Hopefully, we can all work together over the interim to build support for the Autism Healthcare protection Act in 2011.