Alright, so if you follow my blog then you clearly understand how hard this has been and how long it took. But, as the saying goes (waxaan loo dheefin looma dhaayo). Minnesota Department of Human Services (DHS) submitted the long awaited autism therapy coverage waiver to CMS last week. As we all remember, MN state legislature approved 1915i waiver in session 2013 and allocated over $12 million. This will cover developmental and behavior therapy for children from birth to 18. Currently, many states have private insurance coverage for ABA (applied behavior analysis) and few states have Medicaid coverage for autism therapy. However, no state has 1915i waiver that will cover kids from birth to 18. I think Michigan might be the only other state with similar waiver, but it only covers for very young kids.
This waiver will also assure the duration, scope and treatment is equal between children on fee for services and low-income kids on managed care health plans. I can’t say enough how happy I am about that. It also has many other good measures that will assure children get medically necessary treatment that is individualized for them. In other words, currently, some ABA providers prescribe 40 hours of intensive therapy for kids whether they are 2, 10 or 20 and that is simply wrong and is not individualized. Autism affects each child differently and should not be one size fits all. Additionally, this benefit has avenues for parents to take in the event they are being discharged or bullied by ABA providers. And, we all know they do probably daily. It has happened to me and I am a bull when it comes to autism, yet I have been told my son is too old, too young, too this, 40 hours or hit the road, etc and etc. I think it is important when this happens to parents that they keep their head high and report to DHS. I will be posting who at DHS to contact soon because autism by itself is hard. Add greedy or racist ABA providers to it and it is pain like no other. But, don’t give up hope, there is light in this tunnel and it is equality, fairness and medically necessary treatment that is family centered and child driven – not provider driven, greed or racism. Yes, greed, racism and provider driven therapies happen daily to families. I think that is sad and frustrating and we must advocate and change that. ABA is good and has research behind for young children. I think for young kids 40 hours is good to at least try for couple of years, but the notion of doing 40 hours for teenagers and young adults is simply not based on science nor research – rather greed and selfish ABA centers.
This benefit also has a measure that requires independent evaluation and assessment because currently the provider just hires some spineless and useless doctor to prescribe either too many hours or too little hours without regard to what the child needs and what the family wants and is capable of. I have seen these spineless doctors prescribe 40 hours of ABA for 17 year old while they say 4-year-old is too old for ABA.
They also have a tendency to not even assess the child, just write whatever the owner of the center wants them to do. Sadly, those that disagree with the owners of ABA centers get fired. I think DHS must step in and stop all of this non-sense of both child and employee bullying and intimidation. The funding is public just like MDE funds public schools or charter schools run by individuals yet the policies are so different like night and day. Could you imagine being bullied by a school district whereby they tell you “bring your kid 40 hours or hit the road”. You, Pacer and MDE would have that school district for lunch by breakfast. Yet, so many MN ABA providers take the same public funds and bully parents in ways that are heart-breaking and in-humane.
Therefore, I ask that DHS which funds these heartless & blood sucking ABA providers to step in and help parents. I for one am excited about this new autism waiver. I also hope that it does not become the million dollar phone that does not ring. In other words, it will be useless unless DHS assures children get the therapy they need and families are respected and validated. In addition, I hope minority communities learn autism therapy, open autism ABA centers and teach their own children in their own culture and their own way. Otherwise, we will always be asking for help rather than helping ourselves. There isn’t a week that I don’t hear of a Somali autism parent that has been discharged, dismissed and disregarded by an over-rated either greedy or racist ABA providers. I kid you not. So, we can either learn how to fish or keep asking for fish daily and take offered a rotten fish. Think about it.
Thanks!
Above words do not reflect any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate