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Medicaid Waivers: Changes Are On The Way

A blog from Angela Lello, Autism Speaks’ director of housing and community living.

Are adult services—such as where you live and work –important to you as an individual with autism or as the family or caregiver of a loved one with autism? If you receive or want a Medicaid waiver for these services, then you need to be aware of important changes coming down the road in YOUR state.

The changes call for “person-centered” planning that provides new rights for people with disabilities to determine their future. And they prohibit home- and community-based services (HCBS) in settings that would “isolate” individuals from the community at large. They were issued earlier this year by the federal Centers for Medicare & Medicaid Services (CMS) and now every state, including yours, is modifying its Medicaid waiver programs to comply.

Person-centered planning

Person-centered planning is a process that can help family caregivers and individuals identify the exact types of supports they need to achieve specific life goals.

Home and community-based services (HCBS) that are funded by Medicaid must now prioritize the needs of the individual, rather than public agencies or providers. The intent is to help people with disabilities assemble the exact services and types of supports they need to live a full and productive life. The person-centered requirements demand greater opportunities for self-determination by the individual with disabilities in planning their future. This means that the development of the plan must include:

  • People chosen by the individual
  • Good information for the individual to lead the process and make informed decisions
  • Choices for services and supports
  • Services based on the individual’s needs and preferences
  • The use of plain language and is accessible
  • A process to resolve any disputes

The debate over settings

Medicaid HCBS provides an alternative to living in an institution (like an intermediate care facility or nursing home). Before this rule, there was no clear definition of what types of settings could be funded with HCBS dollars. This rule clarifies the process by which states will determine whether a given setting can be funded with Medicaid HCBS.

How states implement this provision will affect the types of services individuals may ultimately receive. There are different opinions about whether or not Medicaid HCBS should be able to fund specific types of programs. Autism Speaks has long been involved in helping ensure that the needs of all members of the autism community were represented in the development of these new standards. Individuals with autism and their families know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings. View our position statement here.

How to find the right supports

Whether or not a particular type of service and setting is available in Medicaid HCBS is totally dependent upon where you live. As states are implementing changes related to these new CMS rules, advocates can get involved in the process and help shape the outcome.

Identifying the types of services and supports you (or your loved one) need to lead a fulfilling and meaningful life can help guide you. In some cases, the supports one individual needs in a state may cross multiple systems and knowing where to go for exactly what you need can be challenging.

We are posting a series of blogs from parents and individuals like you, who need adult services. Their stories highlight the different paths someone can take to achieve as much independence as possible.

What can you do?

Each state is addressing these new requirements in its own way and on different schedules. But every state must allow its citizens to weigh in. Autism Speaks is tracking this activity in each state and has alerted our community by email and through social media to make their voices heard. These are important decisions that will affect the quality and level of services you or your loved one with autism can expect in the years to come.  To receive these email alerts, register with Autism Votes HERE.

To learn more about the new Medicaid HCBS waiver changes, visit Medicaid Home and Community Based Waivers


The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.