Alright – so, Minnesota Department of Human Services (DHS) held a meeting with autism therapy providers and few autism parents last week. DHS wants to propose changes to the existing autism intervention statute that governs early intensive behavior and developmental intervention (EIBDI).
I think this is a good idea. Some of the proposed changes are the qualifications for level one therapist. Other changes are agency responsibilities and parent rights. According to the Minnesota Department of Education (MDE), there are over eighteen thousand children with autism. Many of those are not getting any autism therapy interventions and we need to have the capacity to help these kids and their families.
I mostly agree with the changes DHS wants to make. I also agree with their parent rights proposal. I would just add where the family can go to appeal if they disagree with the provider’s treatment plan. I would also like to see DHS engage more with families and help them understand their rights and responsibilities. I would like DHS to ensure providers understand they can’t just discharge the child for no reason. There must be a reason with data and facts, the family must be part of their child’s clinical team as equal partners and there must be a transitional plan in place for the child.
In other words, we don’t want these blood sucking and greedy providers (not all of them) to just discharge kids because they feel like it. The appeal process must be clear and easy to understand by all parents including minority families or those who may not understand the legal lingo of the appeal process within DHS. As an autism mom who used DHS’ appeal process – I strongly recommend DHS help parents learn and understand this complex system.
I have seen some autism therapy providers discharge children who were five years old and said the child was too old, I have seen kids discharged because they were nonverbal, lived in poor neighborhoods, the parent asked too many questions – yada and more stupid yada reasons.
I have seen DHS issue corrective action against some of those providers telling them they were wrong and violated Minn statute that states person-centered and family friendly services. I have seen the Minn Disability Law Center and the Minn Ombudsman’s office defend autism families who have been screwed by autism therapy providers. I really think DHS needs to be a little less provider friendly and a lot more child/family friendly. After all it is the child and their family who need the services and treatments.
Another area where folks had a lot to say was DHS’ new online CMDE and ITP forms. DHS changed this end of last year without any parent/provider and stakeholder input. Obviously this was not a good move and we complained to the Centers for Medicare and Medicaid (CMS) who pays half of EIBDI services. Additionally, the EIBDI statute clearly states DHS needs to engage with stakeholders before it makes changes. Additionally, it put extra steps that many low income autism families would not be able to have such as having access to the internet. Not all autism families have access to the internet and the Medicaid agency can not demand that. We have since then negotiated a more appropriate and doable process.
Overall, I think DHS autism division is getting better in serving children with autism and their families. They are trying to be more diverse, translating their services in various languages, and being in compliance with LEP federal law. Their staff are not cocky anymore and are actually walking on the ground. They have a new supervisor who I think is simply fantastic.
Here is the parent rights proposal and I would urge any autism parent/family to send their comments to DHS because if we don’t speak for our children no one else will.
Above words do not represent any candidate, agency or committee.
Idil – Autism Mom