Idil Abdull
Somali Autism Mom & Retired Advocate
8.29.23
Re: Public Comments on Early Intensive Behavior & Developmental Intervention (EIDBI) proposed changes
Dear Madam/Sir at CMS:
I write to you to support these changes (level 1 and level two changes) but have great and grave concerns in how the state Medicaid agency (DHS) is proposing changes. Even though this is a publicly funded program that is intended to help children with autism and their families, DHS has been silencing parents and providers for the past few months even more than usual.
I have the following comments and concerns and appreciate CMS for always looking at any proposed DHS changes with a grain of salt. Never assume what DHS is telling you is actually a fact. Always verify and confirm with objective subjects.
- DHS did not come to the public with these changes. I have asked many autism families and providers; no one knew about this except select few that agree with DHS. As you know, I have relentlessly advocated for this benefit, I am an autism mom and provider and I had no idea. DHS came up with these changes without input from us.
- These changes are not bad, but needed parents and providers input since it affects us the most. Additionally, we would’ve suggested to have the level one therapist to have 4,000 hours of working children with autism and/or related conditions and speak another language. As you know, autism is high in our children and if the goal is to have therapists who reflect the communities they serve then this would make sense.
- Sadly, DHS’ goal is to silence us if we do not agree with them or question their tactics. I cannot imagine any public funds with such elite and discriminatory policies. DHS does not have to like autism families or our questions, but they must answer if our questions relate to the EIDBI benefit.
- They have been giving one hour so called “training” to EIDBI providers who are mostly minorities. The trainings are given by a non-minority person (Ms. Berning) who has zero clue about cultural responsiveness or person-centered services.
- Even though EIDBI has developmental therapy component that was very important to CMS particularly Ms. Harris as she so eloquently stated in the Inter Agency Autism Coordinating (IACC) committee a decade ago, DHS has refused to hire a clinical person for the other modalities (ESDM, Play Project, Floortime, DRI, and ESI). They only have one clinical lead who is not certified nor has experience in any of the developmental modalities. I think this is neglect and dismissive to providers and families interested in these important and research based developmental modalities that CMS approved.
- DHS has informed me that they will mute the public during these one-hour trainings which will ensure no one asks them any questions, has any comments or can ever disagree with them. How is that behavior allowed in a program that is publicly funded and advocated by minority autism parents. Additionally, DHS stated they will answer questions from autism families and providers at their “discretion” This is how disparities happen when discretion becomes the norm. I ask CMS to please intervene. DHS should have no right to dismiss, disregard or discriminate against any autism family or providers at their “discretion”.
- They have refused to train minority EIDBI providers properly in a manner that is comprehensive and uses culturally responsive methods. I have received complaints from minority owned EIDBI providers that they don’t understand policies and billing procedures. When I ask them to contact DHS, most if not all, have told me they are afraid of DHS. I can understand this since DHS notoriously bullies and intimidates minority providers particularly Black ones.
- The majority of minority EIDBI providers are afraid of DHS closing their agencies. This is justified as DHS has closed many minority providers is public knowledge.
- Many EIDBI families especially in the Somali community believe DHS approves minority EIDBI providers as bait and is trying to go after them.
- DHS has refused to come to minority communities and train us about EIDBI services in a manner that is person-centered and culturally responsive. From what I can tell during the past few years, they have come to the Somali community maybe once or twice. The last time was this month, many parents reported to me their policy lead – Ms. Hicks refused to answer questions initially until she finished her power point then stated the microphone is broken. They did not bring an interpreter to translate the information even though the civil rights act of 1964 requires it. I heard from Somali autism parents who questioned these blatant racist tactics and were more confused after the meeting ended. Many felt ignored and dismissed by Ms. Hicks, who is DHS EIDBI policy lead.
- Even though, majority of children with autism being served under EIDBI are black and brown, DHS refuses to hire someone who looks like us in either the clinical or policy area. This is like a man teaching a mother how to give birth. It simply has not and will never work.
- When I complained to DHS’ EIDBI manager – Mr. Flint about this, I was told I was ranting and angry. Gee, I wonder where I heard that before, a black woman being called angry and ranting, how original.
- I sincerely ask CMS to intervene and question DHS how they are ensuring black and brown autism families are getting information about EIDBI services as well as how DHS is training minority providers. What and how DHS is currently behaving is shameful, wrong and at best bias and at worst racist.
- DHS often claims and uses their closed to the public “advisory council” for justifying the public was aware. This council does not hear from the public, the public is not allowed to talk with them, and they are completely controlled by DHS.
Here is what DHS is proposing to change within EIDBI without any input from the public, objective and non-controlled public that is – including autism families, providers and advocates.
Date: Aug. 2, 2023
To: Early Intensive Developmental and Behavioral Intervention (EIDBI) providers, people with autism spectrum disorder (ASD) or related conditions who receive EIDBI services and other interested parties
From: DHS Disability Services Division
Purpose: To announce a 30-day public comment period on proposed changes to the EIDBI benefit
Comment period begins: 8 a.m. on Wednesday, Aug. 2, 2023
Comment period ends: 4 p.m. on Friday, Sept. 1, 2023
Contact: DSD.PublicComments@state.mn.us
DHS seeks public comments for proposed EIDBI changes
DHS is hosting a 30-day public comment period about proposed policy and procedure changes to the EIDBI benefit. We would like to receive input about the changes from:
- People who receive EIDBI services
- Family members of people who receive EIDBI services
- Service providers
- Any other interested parties.
Legislative changes
DHS will enact legislative changes that passed in the 2023 session, which include:
- Rate increases of 14.99% for EIDBI services (effective Sunday, Dec. 31, 2023, or upon federal approval, whichever is later)
- Provider qualification changes to ensure Native American providers can enroll as level II providers.
To review the complete legislation, refer to Minn. Laws 2023, Ch. 61.
Proposed variance changes
DHS proposes to add two provider variances to continue to address the direct care workforce shortage. For more information on the workforce shortage, refer to DHS – The direct care workforce shortage in Minnesota and DHS – Building EIDBI provider capacity.
Proposed level I variance
DHS proposes the following level I variance to help account for experience within EIDBI provider agencies. This variance recognizes the value of clinical experience and accounts for the barriers to advanced education, such as cost, time and other commitments.
To qualify for the variance, the level I provider must meet all the following requirements:
- Be employed by an EIDBI provider agency.
- Have at least 6,000 hours of clinical experience providing early intervention services in the treatment modality the EIDBI provider agency uses (refer to EIDBI – Treatment modalities).
- Have a bachelor’s degree in a related field.
- Complete the required training for level III providers on EIDBI – Individual provider trainings.
For existing policy information about level I providers, refer to EIDBI – Level I provider qualifications, roles and responsibilities.
Proposed level II variance
DHS proposes the following level II variance to help expand the workforce of EIDBI providers to meet the growing need.
To qualify for the variance, the level II provider must meet all the following requirements:
- Be employed by an EIDBI provider agency.
- Be age 18 or older.
- Complete initial certification in the treatment modality the EIDBI provider agency uses (refer to EIDBI – Treatment modalities).
- Complete the required training for level III providers on EIDBI – Individual provider trainings.
- Receive observation and direction from an advanced certification provider at least once per week until meeting 1,000 hours of supervised clinical experience.
For existing policy information about level II providers, refer to EIDBI – Level II provider qualifications, roles and responsibilities.
DHS submitted these variance proposals to the federal Centers for Medicare & Medicaid Services in accordance with Minn. Stat. §256B.0949 subd.17.
Additional information
The drafted state plan amendment for review includes the legislative changes and the proposed variance changes. For more information, refer to 23-17 draft (PDF) on DHS – Minnesota’s Medicaid (Title XIX) and CHIP (Title XXI) state plans.
Process to submit comments
Email comments to DSD.PublicComments@state.mn.us no later than 4 p.m. on Friday, Sept. 1, 2023.
Additional input
In addition to the public comment period, DHS will consult with the EIDBI advisory group, providers, parents/guardians and other interested parties before making these proposed changes. (Note: this is incorrect, DHS did NOT consult with everyone, maybe select group that they can control or will agree with them; they did not attempt to reach out to a larger audience and public members). Ask them to prove it and provide facts).
As always, I thank you for your time and unapologetic support for all children with autism and their families. EIDBI would not be possible without so many wonderful people at CMS. We are eternally grateful to you. Sadly, we need your help again with DHS.
Sincerely,
Idil Abdull – Somali Autism Mom & retired advocate