As we all know by now, Minnesota state legislature passed an ASD benefit for children up to 18 that will cover behavior and developmental therapy in 2013. This passed after MN DHS kept covering these therapies for wealthier upper/middle income autism families on fee for service Medicaid while it denied low income managed care Medicaid autism families. Yes, I know bias and discrimination at its best.
At any rate, MN DHS realized it (OK, years later after we – mostly Somali autism community fought and advocated persistently) and decided to pay for every child, call it what it was instead of skills training or camel training and do it fairly.
They then created an ASD advisory committee that gives them their take and comments of the new Autism benefit.
What I find most interesting, but not surprising here is the fact that most of these now really caring advocates & providers never showed up, testified or advocated when this benefit was being written and going through the house or senate. There were only two providers – MAC that testified in favor and helped. Fraser rep was also always there. Other than that none of the other folks came or cared whether this passed or not. They were too busy trying to take $25 million from health and human services budget – from the poor and disabled, and give it to the upper/middle autism families which of course didn’t happen.
Now all of the sudden, they show up and have lots and lots of comments and ideas. Interesting! They even created some kind of exclusive club called autism treatment network that has zero person of color. In fact, Augusta National Golf Club is more welcoming than this autism club. It is led by a provider that probably has almost non-existent person of color as staff and even less as autism families, Lovaas. These folks now show up and it just never ceases to amaze me this is 2014 in a very progressive and moving forward state, yet so unwelcoming and barbaric in many areas.
Anyway, I think DHS is doing well in developing this benefit. I just have some concerns which I keep making. Unless there are clear rules and policies of how many hours and intensity each child is allowed, the well-off will sue if their kids don’t get enough intensity hours and the poor will not. This will create even more autism disparity since the poor are disproportionately minorities. What I hope DHS does is get some guts and set specific hours/intensity probably more for younger kids and less for older kids so that the playing field is leveled off.
Plus, because some clueless state legislator increased Minnesota poverty limit because some upper/middle class autism families did not want to pay for the parental fee (which by the way was fair and reasonable) might hinder getting the 1915i autism waiver. This waiver has specific guidelines of who can use based on Federal poverty policies.
Some good news is according to CMS (Center for Medicaid & Medicare) which administers Medicaid waivers including 1915i stated that there is a way for states to get this even if their poverty limit is higher than 150%. In other words, it can go up to 300% of the poverty limit for 1915i as long as individuals are eligible. I am hoping this means we can still get this 1915i autism waiver. Otherwise, the poverty guidelines have to go back to their original limit because somehow MN has to get an autism therapy coverage for the poor and low income families.
As usual, above words are my opinion and do not reflect any committee or agency.
Thanks!
Idil – Somali Autism Mom & Minority Advocate