Monthly Archives: September 2014

Centers for Medicaid and Medicare (CMS) released FAQ few of days ago on Sept 24th, 2014 about autism. Basically CMS said all the right things. Folks, it does not get better than this. In a nutshell, CMS will cover autism therapy of both ABA and developmental therapies for children from birth to 21 for all disabilities not just autism. I think that is simply fantastic. Plus, CMS recognizes the need for medical necessasity and objectivity in treatments. And, it gets better, because the funding is both Federal and State – all autism providers including ABA clinics must follow the Federal guidelines of culturally and linguistically appropriate services (CLAS).

Seriously, I feel like a kid in a candy store. I have hoped, prayed, begged, asked – ok harassed for this type of inclusive, holistic and non-bias approach to autism treatment and therapy. So many people at CMS deserve thanks and kudos from Tavenner to Mann, O’Brian, Johnson, etc and etc.

For our state, I think the lone person that kept asking the most and articulated so well is Anne Henry from Minnesota disability law center (MDLC). Anne has championed for managed care autism kids at the state legislature by asking to get the numbers of how many kids on MCO’s are getting ASD therapy and at what age. I think this will help ensure minority kids who usually have managed care health plans get equal access to early autism intervention so they can reach their best outcome and full potential.  Huge thanks to Anne who I have gotten to know and she rocks. Anne has helped me with many CMS advocacy in recent months as well.

DHS also had an autism meeting last week on Sept 16th, 2014 where they informed us (parents, providers, advocates) their intention to change their 1915i autism waiver to newly approved and better method of autism therapy under the EPSDT state plan. People gave their thoughts and opinions and DHS took all of them and considered when it could and submitted the application to CMS for approval. This is when a state agency is simply perfect. Gather stakeholders of whatever issue, get their honest input, consider them and include in your final plan. I mean maybe MDH and even MDE can learn from DHS. I am simply impressed by DHS’s new autism team. I am so grateful and appreciate all of their work and support for ALL autism families irrespective of income, race or nationality. Personally, I am extremely grateful and appreciate all the hard work everyone at DHS autism team put into this – especially Anne H and Loren C.

DSH even went further and asked all stakeholders to participate in another area that needs improvement such as the safety of physical buildings our kids go for autism therapy hours at a time. Currently, there are no good standards to assure the child is safe and learning appropriate skills. In addition, DHS wants input from everyone on medical necessecity because a provider can make poop therapy medically necessary and at the same time a bias provider can discharge a child prematurely by claiming it is not medically necessarity. In other words, no family irrespective of their race, color or nationality shall be bullied, intimidated or harassed by any ABA or any autism therapy provider – period. Sadly, it happens a lot here in Minnesota and probably nationwide but we are determined to stop it at its tracks so that ALL children get the best intervention possible at the right time fairly.

If you are interested in participating in this work group which will meet on three Mondays in October and Nov 2014, please contact via email DHS autism email [email protected] – If you are mental health professional of color, I beg you to please take part. Your input and ideas are sorely needed. During the last meeting, there were several Somali autism parents, but we still need professionals of color and more minority autism parents to participate and give their ideas and input. If we don’t speak up and advocate for our children and our communities – who will? No one else will, we must do it rather than just complain of inequalities and bad services. Change comes from speaking up.

In a somewhat related to this post, I just received a notice that Health Services Advisory Council (HSAC) which decided or set the ground work for this autism benefit a little while ago after the state legislature asked DHS to come up with an autism benefit – has added minorities to their team. When this ASD benefit was being decided HSAC had zero African American person and I have been asking – ok begging for them to add some color. HSAC is led by Dr. Jeff Schiff and Ellie Garrett (who in my humble opinion are some of the most inclusive, welcoming, and wonderful people I met at DHS) took that suggestion to heart and looked high and low for physicians of color. And, HSAC is now 1/3 minority. I am ecstatic about this and appreciate Jeff and Ellie’s willingness to not just say we are committed to diversity, but actually be committed to diversity with action. You see there is a difference when people say that vs when they actually do it. And, they did it. Awesome!

Above words do not represent any candidate, agency or committee.

Idil – Somali Autism Mom & Minority Advocate

I have been thinking a lot about this simple sentence of supply and demand lately. Those few words drive the economy, how much we pay for things, how long we wait for services and resources, etc and etc. They also drive autism therapy and autism services in Minnesota and probably nationwide.

We know that there are thousands children with autism in Minnesota (over 17 thousand) and less than two dozen autism early intervention providers are here. In other words, the demand for ASD therapy providers is so high that the waiting is list often as long as years which defeats the purpose of early intervention is the best hope for ASD kids. None of these couple dozen ASD therapy providers are owned or run by a person of color which also means most minority ASD children are on even a longer wait list, discharged sooner, never accepted, so on and so forth.

Have you ever heard of last hired and first fired. This usually means the last hired is most likely a person of color and the first fired is probably a person of color. This same method is used by many autism therapy providers who usually take few minority ASD kids then if there is a staff shortage – they are the first to be discharged or told we don’t have staff for you. Those that provide in home therapy also don’t like to go to minority communities. For example, I would say there are not a lot of in home autism therapy in north or even south Minneapolis by Cedar Riverside area.

This supply and demand problem can also dilute the quality of the providers, especially when DHS has no policy to control and assure any quality. This part is so insane. How can the biggest state agency in charge of this not have any quality control for these autism providers that are teaching our most vulnerable children. I remember couple of years ago, when DHS also did not have good quality for child care centers and one brave reporter kept writing about that which resulted an overhaul in policy and regulation in Minnesota and nationwide. And, one thing I learned about reporters is that they usually write something that either affects them personally or they are interested. For example, any reporter with young children that go to child care centers is much more likely going to be interested in that than say autism centers.

So, I imagine if DHS did not wait for a reporter to write about the lack of safety and quality control in autism centers. I imagine if DHS did not wait until an autistic child got hurt or sued DHS for negligence. I imagine DHS used common sense of they certify, fund, inspect and audit these autism therapy providers and the very least they can do is to make sure the children are learning well and are safe. Why is that so hard for DHS, I wonder?

Yes, I know many of the quality of the providers will be addressed in the new autism waiver benefit, but not all and unless our kids are safe and are learning well – I don’t think anyone or building should be called an autism expert or clinic. There must be safety measures, quality control and data reporting for all children that get hurt little or big to DHS.

Again, I ask Minnesota Department of Human Services to relook at this issue of autism provider safety and quality control before a child really gets hurt.  I hope DHS can learn something from MDE in quality control. For example, charter schools are funded by the same means as ABA in Minnesota of both state and Federal. Yet, charter schools have actual rules, policies for those in charge and for parents. By the same token, for many ABA providers not so much even though the funding is from the same sources. Why is that? Is it because the supply and demand is so huge that DHS looks at this with a blind eye. I really hope not.

We need DHS to be the adult here and take charge of assuring our autistic children and teens are learning and are safe. DHS must inspect the physical facility, ask for independent evaluations to assure the child is learning and progressing to reach his/her best outcome and the parent is part of the team, not sitting on the sidelines to just sign ITP’s. Another example, when a center says a child will get one on one treatment, what happens when that does not happen and it happens often in ABA centers. For example, two or three children are assigned to one therapist due to vacations, staff turnover, firings, quitting, vacations, etc.  Should that be notated, parents notified and DHS aware.

Above words do not represent any agency, candidate or agency.

Idil – Somali Autism Mom & Minority Advocate