Proposed Medicaid Changes and Adults with Autism

The battle of the budget, deficit reduction and the debt ceiling rages on in Washington. The proposed Medicaid changes could have a significant impact on adults with autism. The following is an executive summary by the Autistic Global Initiative (AGI) concerning the proposed Medicaid changes:

Executive Summary: Response to the Advanced Notice of Proposed Rule Making for CMS-2296-P, Medicaid Program Home and
Community-Based Services (HCBS) Waivers

Submitted by A Four-State Alliance for ASDs Adult Community Housing & Living and The Autistic Global Initiative (AGI)

This executive summary responds to the ANPRM, detailed in CMS-2296-P. While in some instances the proposed rule change is supportive of the populations we represent, there are several instances where sweeping rule changes negatively impact individuals with autism spectrum disorders (ASDs) and related disorders, and do not afford the nuanced diversity of needs and supports that the terms “person-centered” and “community-based” imply. For a copy of the full letter, see:

Participants in this executive summary and the full comment letter have come together for a specific purpose: to offer a collaborative statement that combines multiple perspectives from the autism community. In doing so, we offer commentary that includes self-advocates with ASDs, parents of individuals with autism, service providers, and professionals working in the autism and developmental disability fields. Although we hold a variety of opinions and beliefs, we find the process of understanding one another to be our strength. We share the fundamental values that housing options for our citizens with ASDs and other developmental disabilities must support individuals’ safety and security, enable them to enjoy meaningful, productive lives, recognize their value within the broader community and promote choices for them and their families.

Our position is simple: one size does not, must not and cannot fit all. Policies and settings must recognize the heterogeneity and characteristics of individuals with autism and provide appropriate evidence-based supports. We need more quality options as they relate to design, service delivery and training. Key principles for housing options must support the individual’s daily life choices, interactions with those without disabilities and accessibility to the broader community. Options must take a multidimensional approach, including the use of technology. Policies that rule out entire housing models cannot be described as person-centered.

With the rapidly increasing population of adults with ASDs and our country’s fiscal challenges, we must encourage not discourage innovation now more than ever. Greater demand and fewer government resources have resulted in a “New Services Paradigm” (NSP) now being implemented, which shifts 24/7 support resources to those who are most in need; whose support requirements reflect that they are either a danger to themselves or to others; or who are at immediate risk of becoming homeless.

For those whose needs are not as severe, they will be asked to stay at home much longer with their parents, their siblings or other extended family. This group will be offered a menu of service packages and options to assist their families in long-term care, either within the family home or in the community. The result: families will be operating as case managers and service providers. Proper training by support brokers/coordinators in self-determination and self-direction models will be indispensible. In order for the New Service Paradigm to function, individuals with disabilities, their families and the universe of support providers at home and in the community must be informed, trained, empowered and well prepared to successfully navigate daily life and long-term security in the home and community.

Summary of Other Comments on CMS-2296-P:

  • Changes should not result in a diminution of current services and supports.
  • Settings created must recognize the characteristics of individuals with ASD and provide appropriate evidence-based supports for effective daily life skills training and behavioral therapies.
  • Intentional communities can simultaneously address several societal needs.
  • The current fiscal environment is not a time to discourage innovation in either design or service delivery.
  • Many individuals already use waivers for intentional or agricultural communities. In addition to those who already use waivers for intentional or agricultural communities, others participate in such communities while on the waiting list for waivers. Neither group should be forced to choose between their home and accepting a waiver.
  • The purpose of HCBS waivers is to promote choices for individuals. Choice should rest with the waiver recipient and not be dictated by policy.
  • Assisted living models should not be arbitrary, by becoming limited to those of a certain age. Assisted living options should be available to those who choose them and for whom they are appropriate, regardless of age.
  • In many cases, models that separate control of the housing from services offer greater stability and flexibility for the individual.
  • Successfully transforming a person-centered plan to a self-directed life requires weaving existing programs and funding streams with natural supports into new patterns. The move to person-centered planning gives individuals, their allies and families unprecedented ability to direct their futures. To coordinate these elements, all affected require training about what is both positive and possible.
  • “Autism One-Stops” could fill a niche by acting as a focal point for training of service providers. In so doing, Autism One-Stops answer the call of Advancing Futures for Adults with Autism (AFAA), representing a collaboration of 14 organizations, and the AFAA National Public Policy Agenda, which prioritizes the training of direct care workers to provide vocational and residential assistance to adults living with autism.
  • The standard audit process is the best way to achieve compliance. Training is needed to ensure providers successfully play by the rules.
    Providers need to have a way to cover the cost of staff and family trainings for groups of parents if compliance is to improve.
    CMS must avoid cutting hours and reimbursement rates if health and safety are to be maintained and experienced providers are to remain in the field.

To learn more about AGI, visit

Photo: VinothChandar/Flickr

About Melissa

Melissa is the mother of two children on the autism spectrum and strives to provide information about all aspects of autism through her blog, The Autism Education Site. Follow Melissa on Twitter. Like me on Facebook.

© Melissa Hincha-Ownby and The Autism Education Site, 2008-2014.


  1. Autistic adults with severe and chronic behaviors (ie..SIB and aggression) are the most at risk for out of home placements and abuse and neglect in out of home settings. We must find ways to support their intense needs without compromising care. Behavioral specialists have not been much help with autistic adults with severe behaviors. Many of these adults have, as Temple Grandin has stated, sensory dysfunction, which requires a carefully tailored sensory approach. It’s more difficult than people realize. It requires careful and thoughful analysis of the individual and unique needs of the severely autistic adult. It’s definately not a one size fits all deal. Behavioral specialists are usually ineffective with this type of autistic adult.