Alright, so we met on Tuesday Oct 22, 2013 for a little less than two hours about Minnesota Department of Human Services’ newly passed ASD legislation.
To give some background here, the last MN house/senate/governor passed a new ASD benefit for low income children on MA/Medicaid. This benefit is called early intervention services and will cover both behavior and developmental services for children on Medicaid up to age 18.
This is a fight that I along with tons of other Somali autism parents have been involved in ever since spring of 2010 after we found out about Rep Norton’s yukky legislation. See that story here:
The short version is Minn dept of human services or DHS was paying autism therapy called Applied Behavior Analysis (ABA) for upper/middle income autism families on fee for service Medicaid, while it denied the same services to autism families on managed care who are usually low income and disproportionately minorities. Hence, the large gap and disparity for autism therapy in Minnesota.
As a result, we had a laser like focus to change this horrible double standard and bias policy. We asked, pleaded, begged, testified and testified some more for equal access. We asked and pleaded for DHS to call autism therapy what it is and not skills training or camel training.
We prevailed in 2013 session whereby Gov Dayton with the recommendations from HSAC (legislatively recommended by prev politicians in charge), and pushed by DHS Commissioner Jesson allocated $12 Million for it. This will be matched 50% by CMS who I am fairly certain will approve this 1915i waiver once MN DHS submits it by end of the year.
Basically, MN DHS and Governor Dayton had three choices, either pay the same therapy and services for managed care kids as you do for fee for services high income kids or pay for no one.
Well – they could not stop services for the fee for service families because many of those parents are doctors and lawyers who would have sued DHS and Gov Dayton’s administration if they stopped medically necessary treatments they have been getting for years. And, they could no longer ignore managed care/low income families, thanks to our friends in the media who kept it on the front burner.
So, I guess the third choice and best choice was to pay for everyone on Medicaid, call it the right name and make it culturally relevant. I think that was a smart choice. DHS will also now make sure that current managed care autistic kids get the same skills training as fee for services do. So, if you are a family that has managed care and has been denied ABA, please call DHS to have that corrected.
Alright, so at this meeting last week, DHS basically updated us on their plan and current CMS application. They asked for advice relating to diagnoses, discharge, parent involvement and education. I thought it was very helpful and DHS folks Anne Harrington whom I respect and admire more than she will ever know and Dr. Schiff who is simply inspiring and so articulate explained it well and thoroughly. There were some folks who were a little disappointed with who will have the authority to diagnose, discharge, decide on intensity, etc, but overall – it was great.
To make it even better DHS just announced they are going to hire a policy specialist to help them with this new ASD policy. See that here:
In addition, if you remember there was an additional language that passed for provider training in CLAS (culturally and linguistically appropriate services) which DHS did not ask for extra fiscal note and said it would do it. I really appreciated that.
Overall – I would give it an A- for this meeting and hope that we can get to a state of equality, fairness and good quality of care for all children with autism in Minnesota.
Personally, I think what would make DHS and Jesson have an A in my mind is if she hired asst commissioners that reflected the communities DHS serves. And, if some of her policy advisers were from diverse communities. I think then I might party like it is 1999. DHS can do this if they really really really wanted to because they do it all the time for non-minority communities by giving them an opportunity to learn and move up.
Thanks!
Idil – Somali Autism Mom & Minority Advocate