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NCD Letter to CMS Administrator Verma Regarding Medicaid HCBS Settings Rule

Friday, April 14, 2017

April 14, 2017

The Honorable Seema Verma
Centers for Medicare and Medicaid Services
U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, Maryland 21244-1850


Dear Administrator Verma:


Thank you for agreeing to meet with us to discuss the potential impact of Medicaid policy changes on people with disabilities who rely on Medicaid not only for traditional medical care, but also for long term services and supports. NCD has nearly 40 years of experience with federal disability policy, and in the past several years, we have closely examined how recent Medicaid policy changes have impacted people with disabilities across the country. We are writing in advance of our meeting because of the March 13th, 2017 letter to governors signaling likely changes to Medicaid policy. As we await a finalized date and time for the meeting, we want to ensure you have our recommendations regarding actions that CMS is likely to take regarding the Home and Community-Based Services (HCBS) settings rule. 


That letter noted that states have asked for more flexibility and that CMS, under your leadership, intends to take steps to give states the flexibility they need to develop and maintain innovative and efficient Medicaid programs. The letter also reaffirms CMS’s commitment to partner with the states to provide high-quality long term care to the millions of Americans who rely on Medicaid, including those with disabilities, for those services. This is the beginning of an important conversation about how to improve outcomes and ensure accountability while providing states with the freedom they need to provide services to meet the unique needs of the Medicaid population in each state.


At a roundtable NCD convened in late September 2016 with participation of senior CMS leadership as well as state legislators, disability service providers, and disability advocates, one message was clear: states can benefit from flexibility, but must also be provided with guidance by CMS that encourages everyone involved to pull in the same direction, and with respect to the disability community, that direction needs to be both sustainable and consistent with the principles of the Americans with Disabilities Act (ADA).


The January 2014 home-and-community-based (HCBS) settings rule was an important step towards ensuring that federal HCBS funds were applied in ways that promote the equality, opportunity and self-determination of people with disabilities who rely on HCBS to continue to live and work in the community, consistent  with the ADA, the Olmstead decision and the direction of last 40 years of federal disability policy.


Unfortunately, many states have systems for providing HCBS that are not consistent with the ADA (and by extension the CMS settings rule), and they will need time to act in good faith to change their systems, in consultation with CMS and with stakeholders from the communities impacted by these changes – including people with disabilities and their families as well as providers. While making many of these changes may require considerable time, NCD believes it is vital that the 2019 deadline for states’ Statewide Transition Plans be maintained without alteration, so that CMS’s commitment to federal policies consistent with the ADA is reaffirmed and so that state momentum to see these systems changes through to completion is maintained without compromise.


Additionally, if CMS envisions any changes to the rule’s heightened scrutiny process, NCD respectfully advises CMS to consult with the disability community prior to these changes and to pursue any changes only so as to be consistent with the following guiding principles:


  1. The central organizing goal of system reform must be to assist individuals with disabilities to live full, healthy, participatory lives in the community. NCD examined outcomes from a variety of residential settings in our 2015 report, Home and Community Based Services: “Creating Systems for Success at Home, at Work and in the Community” and found, almost without exception, that people with disabilities, not unexpectedly, experience better outcomes in smaller, community-based settings. 
  2. Systems must be designed to support and implement person-centered practices,  choice, and self-determination.For non-elderly adults with disabilities, employment is a critical pathway toward independence and community integration. Systems that rely on subminimum wage employment models are outdated and not aligned with the nation’s policy goals with respect to disability. Working age enrollees must receive the supports necessary to secure and retain competitive, integrated employment.
  3. CMS should rigorously enforce the ACA “maintenance of effort” provisions in granting health and long-term service reform waivers. The agency should require that any savings achieved through reduced reliance on high-cost institutional care, reductions in unnecessary hospital admissions and improved coordination and delivery of services be used to extend services and supports to unserved and underserved individuals with disabilities.
  4. The state must have in place a comprehensive quality management system that not only ensures the health and safety of vulnerable beneficiaries but also measures the effectiveness of services in assisting individuals to achieve personal goals.

NCD has a proven track record of bringing stakeholders together for the benefit of key federal partners and is very glad to continue to play this convener role to assist CMS in gathering information from disability stakeholders to help facilitate discussion of potential changes. While we are pleased to see the level of engagement demonstrated by the letter to governors, we urge you to consider the perspective of people with disabilities who will be most impacted by any changes to Medicaid at the state or federal level as you begin to make significant policy changes.


We greatly value the opportunity to meet with you soon and look forward to finalizing a date and time with your scheduling staff in the near term. Until that time, if we can be of any assistance to CMS, please do not hesitate to contact Joan Durocher, Director of Policy, at


Clyde Terry


Cc:// The Honorable Tom Price, U.S. Department of Health and Human Services

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