#67 - HCBS Waiver, Fair Labor Laws, & Advocating for Choice


Ashley Kim is the director and national coordinator of the advocacy coalition Together for Choice. Together for Choice is a 501(c)(3) organization with a mission to unite, to protect, and advance the rights of individuals with intellectual and developmental disabilities to live, work and thrive in a community or setting of their choice. 

The conversation covers the complexity of the issues surrounding new HCBS waiver rulings and also the Fair Labor Standards Act. This is a must listen to conversation if you plan on utilizing government funding options for quality of life in adulthood.

Mentioned in This Episode

  • Section 1915 C of the Social Security Act authorizes states to offer home and community based services (HCBS) as an alternative to services in institutions such as nursing care facilities, hospitals, and intermediate care facilities (ICF). These waiver programs are partially funded by federal medicaid money administered by the federal agency called Centers for Medicare and Medicaid Services (CMS).

  • CMS initially interpreted section 1915C as saying states could allow HCBS funding in any setting that is not an ICF, hospital, or nursing care facility.  This interpretation allowed a large range of settings and choices. In 2014 CMS introduced a new interpretation of section 1915C under HCBS. The rule is good and the intention is good. It states HCBS funding can be used if settings are integrated, supports access to greater community, and facilitates choice, along with other great requirements.

  • Where it got tricky was new and vague wording in the rule stating the setting could not have “qualities of an institution”. This expanded the meaning of institution to target characteristics such as farm communities, gated communities, and large congregate disability specific communities.

  • These qualities require the setting to undergo a process called heightened scrutiny which is a further look to ensure the setting does not have institutional qualities. This is fine and even welcome, the problem came when states chose to simply prohibit or restrict these settings to avoid the burden of having to go through the heightened scrutiny process.

  • Because of the way several states have tried to avoid the heightened scrutiny process, many new housing projects and opportunities were halted because of the message being sent that there would not be support and even possible resistance to any such projects moving forward.

  • In 2017 Together for Choice was formed as an advocacy group supporting organizations wishing to move forward with housing projects that were facing this resistance. The need for such an advocacy group was so great that in 2 years it reached all 50 states. 

  • In addition to housing, Together for Choice is advocating for employment choices as supported by Section 14C also known as the Fair Labor Standards Act which offers incentives to employees to hire individuals with disabilities requiring significant supports in order to preform their job. 

  • There is a movement to end this program because some feel it is exploitive to hire an individual with disabilities at sub minimum wages. However, the majority of employers who utilize section 14C are nonprofit organizations designed to teach and enable individuals with disabilities who would not have opportunities in the competitive job market. These organizations usually are having to raise a significant amount of money to cover expenses and without these organizations many who require significant supports on the job would no longer have an employment option. 

    The Latest

  • The law firms of Brown & Peisch and also Covington & Burling are supporting the advocacy efforts of Together for Choice pro bono.

  • CMS is currently working on a new guidance to address the problematic guidance that targeted some of the settings mentioned in this episode. This will come out in 2019. Important to know is that interpretations of HCBS rulings differ from state to state. Click here for the latest on what is happening in your state.

  • Together for choice is active on Facebook. To contact Together for Choice go to the website and find a member on the board of directors. Together for Choice accepts sponsorship from individuals and organizations. To join the growing list of organizations coming together to support Together for Choice, click here. Updates to HCBS rulings will be posted on the Facebook page and also sent to those on the email list.

Related Episodes:

This show is part of a 12 episode advocacy series. Listen to other topics in the series via your favorite podcast app or directly on the LOMAH website