Dear Somali EIDBI (Autism Therapy) Center Owner – Listen Up

Alright – so, unless you live or want to live under a rock, you have read or heard Somali autism parents and members of the Somali community initiated and took it to the finish line the law that passed 5.2013 which allowed medical assistance to cover autism therapy. This was done when the non-Somali autism community including parents and mainstream agencies testified and lobbied against it. They wanted the state to subsidize private insurance companies and cover ABA therapy. Clearly, we beat them. Don’t hate the player – hate the game. We used simple hard-work, strategic and focused advocacy to the end of this legislation.

Move forward to 10 years later, Somalis are opening autism centers like no other community. This is good, bad, and ugly.

Let’s start with the good:

1. There are now many, ok some young Somali professionals who are licensed mental professionals. Yum.
2. There are highly educated people opening some of the agencies with integrity and ethics. Yum
3. They are teaching our children what mainstream agencies did not – actual skills and progress is being made. Yum.
4. Many of them care about autism as it affects someone in their family. Good they care, yuk that autism is high in our children.

Now that bad:

1. Almost all of them refuse to learn about legislation, history of EIDBI, and policies. Yuky.
2. Almost all of them refuse to defend themselves and their work. Yuky.
3. Almost all of them kiss the ass of those who were against the very benefit they are now functioning under. Yuky.
4. Almost all of them are confused about this benefit, and do not want to learn. Yuky.

Then the ugly:

1. Few of them think this benefit or autism is a money-making machine. Yuckier and may you go to hell.
2. Few of them are not helping the children and families learn the needed skills. Yuckier.
3. Few of them have no idea what the heck autism is and sometimes what EIDBI stands for. Are you bleeping kidding me? Yuckier.
4. Few of them are exploiting tired and sad autism families to fatten their pockets. yuckier and may you go to hell.

Now, who the heck am I and what gives me the audacity to say above words. I am glad you asked. Let me introduce myself.

1. My son was discharged by racist and inhuman person Dr. Eric Larsson when my kid was five years old. Larsson told me – he would never be cured from autism. I thought my world ended and cried like one of Oprah’s ugly cries.
2. I then begged Larsson and his fellow Lovaas owners, Linda Wright in NJ and Scott Wright in CA. They sided with Larsson and refused to take my son back.
3. I then went to Arc, and the MN Ombudsman’s office. They met with Larsson and he refused to take my son back.
4. I then went to complain to the Governor’s office (Pawlenty) to see if my son had any rights.
5. Pawlenty’s office referred me to DHS who said – they do not even cover ABA. What now?
6. This started our advocacy journey. We had to find out what DHS meant they do not cover ABA. They were covering for my son and my fellow autism mom (Hodan) daughter.
7. Hodan, Istahil and Idil go to the Somali community leaders (Dr. Fahia, Mohamed Jibril, and Hussein Samatar) to help.
8. Other Somali autism parents especially fathers join the cause (Cascase, Jama, Yusuf, Fanax, Abdihakin, Nuur, & Abdiqadir Diriye)
9. We testify in every committee in the House and Senate.
10. Rep. Abeler (he was in the House back then) and chaired a committee proposes DHS to come up with what the heck it pays and what it can cover.
11. Finally, with the help of Mpls Tribune Maura Lerner and Pioneer Press Chris S cover the double standard ABA coverage in Minn and how low-income kids are not getting covered.
12. We go to the Governor’s office asking to add MA to cover ABA therapy.
13. Finally, DHS commissioner Jesson (I miss her) and Governor Dayton added it to their Human services budget.
14. Most of the Somali community and parents are tired now and slowly but surely start not coming to the capitol.
15. Meanwhile the non-Somali autism community and families get organized; they hire a lobbyist and a publicist.
16. Every (five of them PIE, Lazarus, Lovaas, Holland, and Rochester center for Autism) join the non-Somali autism advocacy efforts which wanted the state to cover ABA for the private insurance autism family but not for the low-income medical assistance family. If you don’t know history, you will befriend an enemy. MAC stays neutral and does not join plus; the leadership of MAC then (Ron Carry and Kathryn Marshall) hate Larsson who is organizing this anti low-income autism family.
17. Dayten added twelve million dollars which the House voted down and the Senate voted down, but the House added the private insurance bill by Rep. Norton from Rochester and deleted the governors for the low-income autism family.
18. The Senate votes down both the private insurance and the low-income.
19. It is now the conference committee, and we are down on both committees and the house has the bill we do not want.
20. Dr. Fahia and I go to Sen. Laurey and Sen. Cohen who chaired the finance committee and was a member of the Confederation Somali Community of Minn and we ask to tell Laurey to put our bill back and kill the private insurance one.
21. The Governor’s health policy calls me in the middle of the night during the conference committee and says, “the governor wants to help the private insurance kid too”. I say sure but they cannot take money from the state budget and subsidize BCBS or any private insurance. She says, “let me see if that is possible”. She calls again and says the House and Senate agreed to this.
22. 1915i waiver that will cover both developmental and behavior intervention passes the health and human services conference committee in the middle of the night on a rainy Thursday night on 5.16.2013.
23. I was the only Somali, the only black/brown person in the committee during this time as people got tired and left.
24. I sit on those long stairs in the Capitol being grateful, tired, and overjoyed.
25. I do not stop there; I get appointed by the Obama administration to be a member of the prestigious federal autism committee IACC.
26. I started advocating the Centers for Medicare and Medicaid cover autism therapy for all low-income autism families whether they lived in Minnesota to Montana or from Alabama to Alaska.
27. So many in the committee agree and have ideas. We all pressure CMS
28. On July 8th, 2014, CMS announces – the federal government will cover both developmental and behavior interventions.
29. I come back to Minn and see if we can change our 1915i waiver and add autism therapy to the state Medicaid plan. Commissioner Jesson, Coleman and Anne H agree.
30. Minnesota requests EIDBI and changes from a waiver to adding under EPSDT.
31. The federal government approves Minnesota’s plan amendment in March 2015.
32. From 2020 to 2024, DHS approves so many Somali EIDBI agencies without adequate training and education leading to the mess we are in now.

Viola! That is, we did it. You see, I have the right to tell you “If you are not doing EIDBI for the right reason and wanting to teach our children skills and empower our families then please leave and screw you”. We have put blood/sweat/tears into this for our children and our families – full stop.

The above words do not reflect any candidate, agency, or committee.

Idil – Somali Autism Mom & Retired Advocate