[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
SC To End Medicaid Waiver Services That ‘Isolate’ Individuals
November 06, 2014
South Carolina is changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that “isolate” participants from the general community, and is inviting public reaction. The new rules will affect Residential, Day, and Adult Day Health Care centers, and other settings.
“The Home and Community-Based Services (HCBS) rule creates a more outcome-oriented definition of home and community-based settings,” according to Healthy Connections, the state’s Medciaid agency. “It does not just look at location, geography or physical characteristics. It looks at how a person spends their day, where they spend their day and with whom they spend their day. The purpose of the HCBS rule is to enable people to receive services in their home and community, keeping them out of institutions.”
Individuals with autism and their caregivers who receive or want Medicaid waiver funding can contribute to the state’s draft plan, summarized HERE, at a series of public meetings scheduled statewide through December 4. Visit the “Events” page HERE for the full schedule.
What’s the issue?
Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid. South Carolina has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks’ live chat.
What can you do about it?
South Carolina is now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.
The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.
Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.
What do the new rules mean?
The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.
However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.
CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.
What is Autism Speaks doing and what can autism families do?
During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders’ views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks’ position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.
Not sure what to say?
It is important that the state hears directly from you about what you or your loved one with autism needs to live as independently as possible. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.
If you are in a waiver program already, use these questions to tell about your experience. For example:
- What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
- Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?
If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:
- Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
- Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.