All states operate Home and Community-Based Services (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.
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.
Starting in 2014, each state began planning to reshape its Medicaid HCBS programs based on final federal regulations, which prohibit states from using HCBS funding for settings that isolate individuals from the broader community. This is an important protection that could help individuals with autism live in settings that are more integrated with the community.
However, in implementing this requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” It is up to each state to identify the type of settings that may no longer be in compliance with the rules and develop HCBS transition plans which outline how the state will change their HCBS programs.
These state HCBS transition plans may impact your Medicaid HCBS such as in-home or out-of-home residential support, day activities. These may include supported employment or day habilitation and other services like respite and family support.
States began the process of developing their transition plans required by the rule in 2015. Now, every state must submit a revised HCBS transition plans which identify the type of settings that may no longer be in compliance with the federal rule, and further outline any changes they will make to their HCBS programs by 2019.
Make your voice heard!
States are required to seek public input on their HCBS transition plans. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state. States with open comments periods are listed below. Follow the instructions in the linked to your state below to submit comments.
Share your story and include the following points when you submit comments:
- Every individual with autism deserves access to the HCBS that will benefit them and will meet their particular needs.
- Many individuals with autism who receive HCBS have difficulty finding providers that can address their complex and challenging needs.
- True integration is only possible if the state reimburses for HCBS based off rate structures and billing guidelines that are tied to the individual's need and not based off the place they live or receive services.
- This is especially true of individuals who are severely disabled by autism.
- The state needs to show how reimbursements will be tied to individual need and not the provider.
More information about the federal HCBS Settings rule:
The federal HCBS Settings rule outlined criteria for certain HCBS programs operated under specific Medicaid waiver programs. (These rules do not apply to intermediate care facility or other Medicaid services – these rules apply only to Medicaid HCBS programs, including HCBS waivers.)
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.
The rules require all Medicaid HCBS services to be planned around the individual and based off the individualized needs, preferences and goals of the HCBS participant and must support full access to the community.
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 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.
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 CMS rules, advocates can get involved in the process and help shape the outcome.
More information about Medicaid HCBS is available online.