While we’ve made incredible strides, our work as advocates is never finished. There are several immediate issues that must be addressed in order to ensure the future of autistic adults and others with I/DD will be full of choices and opportunities:
- Policy must not limit where individuals can access the direct supports they need to live ,work, or play in their community.
- Waitlists for access to essential support services continue to grow, and advocates must urge their state to increase funding in order to meet the growing demand for adult services.
- States must offer flexible enough waiver options to meet the diverse needs of individuals with I/DD, including by way of consumer-directed or self-determination waivers.
- Housing lacks affordability. Therefore, advocating for more affordable housing funding is essential to ensure individuals with I/DD can afford homes and are not forced into the “next empty bed” when a crisis arises.
Specific Issue Limiting Housing and Support Choices for Citizens with I/DD
The Centers for Medicare & Medicaid Services (CMS) is the primary source of funding for persons with intellectual / developmental disabilities (I/DD) to access long-term support services. CMS offers states the option to create Home & Community-Based Service (HCBS) waivers which literally “waives” the requirement of being institutionalized to receive support. In other words, citizens with I/DD waive their institutional entitlement to access services while remaining in their homes and communities.
Starting in 2009, the Centers for Medicare & Medicaid Services (CMS) released proposed regulations in the Federal Registrar requesting feedback from the public to important changes in regulations for HCBS waivers. For over five years of revisions, the proposed policy used physical characteristics to define what is a ‘home and community.’ These proposed versions of the regulations would have potentially restricted housing and employment options for many. Advocates responded with the demand for less restrictive definitions of ‘home and community’, that one’s person-centered plan should guide their housing and support goals, and to take into account the diverse life goals, lifestyles, and support needs of citizens with a variety of impairments.
“In this Final Rule, CMS is moving away from defining home and community settings by “what they are not” and toward defining them by the nature and quality of individuals experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.”
This was a huge victory for advocates and the future of access to support services! See the exact requirements of these new HCBS regulations on the CMS website.
Soon after the release of the federal requirements, CMS offered official “guidance” in an “implementation toolkit” that included a document called, “Guidance on settings that have the effect of isolating individuals receiving HCBS from the broader community.” CMS shared examples of specific settings including: farmsteads, gated / secure “communities” for people with disabilities, residential schools, and multiple use campuses as “having the effect of isolating.” If the state or federal government decides a setting is isolating, waiver recipients who call that setting home will lose their HCBS funding or be forced to leave their home and community.
Fortunately, many CCC advocates and others raised their voice to challenge what the government labeled as “isolating.” Thus, we are proud of CMS and their willingness to listen to advocates whose supports were at unnecessarily at risk due to the unintentional consequences of the above guidance. In March 2019, NEW guidance was released which supersedes the problematic guidance and is much more outcome oriented. See the new guidance here and the official CMS HCBS Implementation Toolkit.
The final regulations were “outcome-oriented”, but CMS guidance is misleading. It is not based on the feedback nor assessment of the quality of life of individuals who are waiver recipients. Many citizens who live in setting CMS has labeled isolating are now at risk. The Coalition for Community Choice and the Madison House Autism Foundation brought 6 self-advocates to Washington DC to share with policy makers their right to access waiver funding in a home and community of their choice must be protected!
For more educational materials on this issue, see the CCC Materials page.