Remember, when HSAC (health services advisory council which by the way had zero person of color) was charged by the state legislature under GOP leadership to come up with a good autism intervention plan for children with autism in Minnesota.
To explain a little bit and give some background. MN department of human services or DHS has been paying and providing autism therapy called ABA or Applied Behavior Analysis for wealthier children that have fee for services Medicaid/MA. All the while – they (DHS) were denying the same and equal therapy for low income children on Managed care Medicaid. Now, fee for service Medicaid and Managed Care Medicaid come from the same funding sources, 1/2 Federal and 1/2 state. Yet DHS (the agency responsible for the poor and the disabled was willingly and blindfoldedly leaving the low income kids with autism who are disproportionately minorities. Then, we wonder why autism disparity is so high among families of color. That kind of double standard policy is exactly why. See that story here. Also, see here when Rep Abeler asked why the disparity creating policy and the double standard of DHS when he was he chair of HHS Finance committee in the house. Those were the good old days, now Rep Huntley just ignores autism and the poor.
We in the Somali community parents find out about it when the queen of autism disparity Rep Norton wanted to pass an autism insurance bill for the wealthy back in 2010. As a result, we make our parent duty to testify consistently in state legislature and ask fair treatment. I remember I would watch when their disability director, Medicaid director or policy advisers were on the schedule to speak and I would walk needles on fire to be there and testify against their double standard policy. At one committee meeting – one of DHS’s puppets told the committee when he was asked do you pay autism therapy for the rich and not for the poor. (well – we pay for running, we pay for catching a ball, we pay for throwing a ball, we pay for hitting a ball with a big stick,” he told legislators, “but we do not pay for baseball). What? If you are confused, imagine how we felt. How does one play any ball without a ball. I mean really – we are a lot of things down here at minority autismville, but stupid is not of them.
At any rate, we learned to connect politicians, their policies and our votes and worked relentlessly to get equal access for all or no access for any. We also asked DHS to call autism therapy ABA what it is and not skills training or camel training.
To make a long story short, in 2013 session – DHS finally came up with an autism therapy intervention plan that passed the state legislature at 1AM on the last day of HHS conference committee meeting. I know because I was the only Black person there as usual that night or I guess morning.
Here is my take on this new benefit which will still need CMS approval and by the way, CMS asks and actually recommends public input and public opinions that is not censured or Ok’d by DHS. In other words, you can make your comments or opinion to CMS and don’t need to go through DHS to do it.
Anyway, my little humble opinion is;
I would give it A- or B+ and here is why. 1st the good;
1st, it will be called what it is and not some under the table name that most parents didn’t understand or know.
2nd, It will cover children up to age 18 as many minority kids get diagnosed later than 7. (remember when Rep Norton wanted poor kids autism therapy to end at age 7 in her kitchen sink amendment introduced in house health finance cmte.) This woman must be defeated in next election).
3rd, It will have an avenue for parents to call if there are disagreements between provider and family.
4th, It will need an objective and outside medical professional to make diagnoses and recommendations including if parents ask for it and they won’t be penalized for that.
5th, It will cover both behavior and developmental therapies since autism affects a child’s behavior and their development.
6th, It will have a component to assure services are culturally and linguistically appropriate.
Now, the bad.
1st, DHS is a services/Medicaid agency and not a health department. Therefore, they are not equipped to do autism research or any research for that matter. And, they should leave this to the professionals. There are already hundreds of millions of dollars spent on what therapy works for what kind of autism by both Federal agencies and many health state dept, but I have never seen research done by a Medicaid agency. I am not sure how they can accomplish this.
2nd, It leaves so much room and decision to DHS bureaucrats in terms of which therapy, for how long and how intense. I would have liked them to have some kind of dollar cap per year and have more hours for younger kids and less hours for older kids. This way, each child would have guaranteed hours of therapy based on their age. Now, what will most likely happen is if and when DHS tries to deny hours or higher intensity for upper/middle class autism families, they will fight and even might sue because they have the means to do it. By the same token, if and when DHS denies hours/high intensity for low income and/or minority kids – they will just accept that and take as they don’t have the means to sue DHS or demand different opinion.
Finally, I really like Dr. Schiff and Ellie who were the brains behind many of the ideas for this benefit. I just hoped they wrote a better plan that regardless of income or color, every child had access to the same services. I think the way it is written now leaves a lot of room for inequalities and more bias decisions.
Above words are my opinions and do not reflect any advisory group.
Thanks!
Idil – Somali Autism Mom and Minority Advocate