What's Happening in Washington?: Federal Disability Policy Updates

by Alison Barkoff, Director of Advocacy, Center for Public Representation

I’m excited to be back with another installment of What’s Happening in Washington? There’s so much going on with federal policy it’s hard to keep up! When people hear “federal policy,” they usually think about Congress passing laws. But that’s not the only way that federal policy is made. A lot of important disability policy is made by federal agencies, like the US Department of Health and Human Services (HHS) or Department of Education (ED). This month, I am going to focus on federal agency activities.

Federal agencies are charged with implementing and enforcing federal laws. One way they do this is by developing federal regulations (also called “rules”). Laws passed by Congress contain broad mandates. Federal rules fill in the details about what the law requires and how agencies will enforce the law. Most federal rules are created through a “notice and comment” process, where the federal agency proposes the rule, the public has an opportunity to give feedback, and then the agency finalizes the rule based on that feedback. Federal agencies also create policies through less formal policy documents (called “sub-regulatory guidance”), technical assistance and even bringing enforcement actions.

Electronic Visit Verification (EVV)

Congress passed a bill called the 21st Century Cures Act in December 2016. The bill requires that states put in place an electronic visit verification (EVV) system for Medicaid-funded “personal care services” and “home health services.” EVV systems must electronically record, among other things, the provider and person receiving the service, location the service as provided and the time the service begins and ends. Congress said that EVV would reduce fraud. States must have in place an EVV system for personal care services by January 1, 2019 and for home health services by 2023 or they will get less federal funding for their Medicaid program. Congress directed the federal agency that oversees Medicaid, the Centers for Medicare & Medicaid Services (CMS), to issue guidance about the requirements and options for states’ EVV systems.

Many people with disabilities, their families and providers have raised serious concerns about EVV. They are concerned about the government tracking their whereabouts and see it as a privacy invasion. If implemented badly, EVV could limit the independence of people with disabilities and their ability to engage in community activities. For people who self-direct services, EVV could be particularly problematic.

On May 16 – almost six months later than the deadline set by Congress – CMS issued guidance describing the requirements for states’ EVV systems. CMS said that the services covered by EVV are very broad – basically, if you get any Medicaid services provided in any part in your home, it will be covered by EVV. That includes everything from help with getting dressed or cooking, to being picked up at your home to go out into the community or to your job, to in-home respite. EVV applies to in-home services provided by both agencies or self-directed. EVV does not, however, apply to 24-7 residential placements like group homes or assisted living. CMS said that states do not have to track the location of people outside their home as they go throughout the community or use tracking devices like GPS. But it was made clear that states can do so if they choose. CMS also described the limited circumstances under which they will consider giving states more time to implement their EVV systems.

The disability community continues to be extremely concerned about EVV, particularly about the lack of time left for states to implement a system based on meaningful stakeholder input and that minimizes privacy and other concerns. Members of Congress are also concerned, particularly after CMS’ guidance. On May 22, bipartisan bills in both the US Senate and House were introduced that would delay EVV implementation by a year. A version of the EVV bill, HR 6042, passed the House on June 19 and then the Senate on July 17. The next step is for the President to sign the bill.   If you are concerned about EVV, there are many opportunities for advocacy – with Georgia officials as they design their system, as well as advocacy with Congress and CMS.

Employment of People with Disabilities

Employment of people with disabilities continues to be a top priority for the disability community, including in Georgia. For too long, people with intellectual and developmental disabilities (I/DD) have had few opportunities for “competitive integrated employment” (or CIE). CIE means jobs where people with disabilities are paid the same wages as people without disabilities, interact with colleagues without disabilities and get the same opportunities for career advancement as their co-workers. Instead, the only option for many people with I/DD is placement in day programs with other people with disabilities or “sheltered workshops” where workers are typically paid well below minimum wage.

In 2014, Congress passed the Workforce Innovation and Opportunity Act or WIOA. WIOA establishes CIE as a national priority and requires states to develop plans to expand CIE. It also significantly limits the use of federal funding of sub-minimum wage sheltered workshops, particularly for students transitioning from school. WIOA required the Department of Education (ED) to issue rules to implement the law.

In August 2016, after notice and comment rulemaking, ED issued rules, and in January 2017, issued further guidance, about CIE. Consistent with previous policies, ED said that for a job to be CIE, and thus a setting in which Vocational Rehabilitation can pay for services, the person must be paid at least minimum wage, interact with co-workers without disabilities in their daily job activities, and that the setting is a mainstream job and not a worksite created only for people with disabilities. For the last 18 months, states have begun implementing these rules. But with the change in Administration, some stakeholders – primarily providers in settings that do not meet the CIE definition – have urged ED to revisit the rules. In May, ED included the WIOA rules on their list for potential rulemaking this year. If the rules are re-opened, it will be critical for the voices of people with disabilities – particularly people who want to work in CIE – to make their voices heard. GCDD will keep you updated about the rules and opportunities for your input.

Other Issues on the Horizon:

We continue to closely follow many other disability issues happening at federal agencies. Below are a few on our radar:

  • HCBS Settings Rule Guidance: CMS issued rules in 2014 that set standards for all Medicaid-funded home and community based services (HCBS). Among other things, these rules require that any HCBS setting provide people opportunities to access the broader community, make choices in their daily life activities, and have opportunities for employment. States are in the process of implementing these rules by the March 2022 deadline. CMS has said that it plans to issue additional sub-regulatory guidance this summer. We’ll update you when that’s out. In the meantime, you should continue to work with state officials as they develop the plan for implementing the rules.
  • Public Charge Rule The Administration will soon release a new rule that could limit the ability of people with disabilities and their families to enter the United States or become US citizens. Under this new rule, a person could be denied admission or have their application for lawful permanent residency denied because they or a family member ever used (or even applied for) a wide range of government programs, including Medicaid, on which many people with disabilities rely. When this rule comes out, it will be important for people with disabilities and their families to comment on how this rule could impact them. We’ll keep you updated.

As you can see, there’s a lot happening in federal policy that impacts people with disabilities and their families in Georgia and across the country!

What You Need to Know About . . .

Electronic Visit Verification (EVV):

Learn more about EVV and ways you can take action at https://medicaid.publicrep.org/feature/electronic-visit-verification-evv/. GCDD will soon be issuing a paper to help people with disabilities and their families understand EVV and its implementation so far in Georgia.

Employment First in GA:

Advocacy to expand opportunities for competitive integrated employment (CIE) is also happening Georgia. The state legislature just passed HB 831, Georgia’s “Employment First” law. This bill declares that CIE be the first and preferred option for publicly-funded services for all people with disabilities. It also creates an “Employment First Council” to develop training, educate stakeholders, and make recommendations to the Governor and General Assembly on needed changes to legislation, policy and funding to advance the Employment First policies. Learn more about the bill here: http://www.legis.ga.gov/legislation/en-US/Display/20172018/HB/831

HCBS Settings Rule:

You can get more information about the home and community based services (HCBS) Settings Rule, the status of Georgia’s plan, and how you can get involved at www.hcbsadvocacy.org

Public Charge Rule:

Get more information on the Public Charge Rule at https://medicaid.publicrep.org/feature/public-charge/

Alison work picture 2014Alison Barkoff is the Director of Advocacy at the Washington, DC office of the Center for Public Representation.
She works on policy and litigation related to community integration and inclusion of people with disabilities, including Olmstead enforcement, Medicaid policy, employment, housing and education.


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