August 15, 2016
The National Council on Independent Living strongly opposes H.R. 5902, the Disability Community Act.
Despite the purpose implied in the name, H.R. 5902 actually interferes with the provision of community-based services which enable people with disabilities to live in the community, while at the same time providing significant Federal funding to institutional providers serving one small segment of the Disability Community – individuals with developmental disability and intellectual disabilities.
The Act was created in response to recent changes to the FLSA overtime regulations, which raise the salary threshold for workers who are exempt from the payment of overtime. These regulations impose costs on a wide range of providers including those that provide community-based services as well as operators of institutions. In response to these increased costs, H.R. 5902 increases the Federal Medical Assistance Percentage (FMAP) to 90% for Intermediate Care Facilities (ICFs) and waivers serving people with intellectual and developmental disabilities.
H.R. 5902 only addresses the needs of a small segment of the Disability Community – those receiving services from providers that serve individuals with intellectual and developmental disabilities.
Although the name of H.R. 5902 suggests broad-based support for the entire Disability Community, the legislation only focuses on funding providers that serve a very limited segment of the Disability Community: people with intellectual and developmental disabilities.
According to a 2012 Census Bureau report, there are 51.5 million adults with disabilities in the US. The same census data indicates that less than 2.2 million of those individuals have an intellectual disability or other type of developmental disability.
Based on these numbers, people with intellectual and developmental disabilities only account for about 4 percent of the Disability Community, which means that H.R. 5902 fails to address the needs of 96% of the Disability Community.
H.R. 5902 adds Medicaid funding to a provider base that already receives a disproportionate level of funding based on the size of the population.
Despite the significant differential in the size of the populations, Medicaid spending for Home and Community Based Services (HCBS) for people with intellectual and developmental disabilities is comparable to the Medicaid HCBS funds spent serving aged and physically disabled individuals. In 2013, Medicaid spent $31 billion on HCBS for people with intellectual and developmental disabilities while spending just 14.9% more than that on HCBS for all aged and physically disabled individuals ($35.7 billion).
Although the aggregate spending suggests there is a disproportionate level of spending on services to people with developmental and intellectual disabilities based on population size, the hourly rates clearly substantiate the issue and illustrate the problem. Even though direct care workers tend to be paid about the same amount in both systems, the intellectual/developmental disability (ID/DD) service providers receive a much higher hourly rate. For example, New York State reported in its Community First Choice State Plan Amendment that ID/DD providers receive between $38.51/hour and $39.00/hour for community habilitation services while personal care – the comparable service for aging and physically disabled individuals – is only reimbursed between $17.41/hour and $20.21/hour. The differences in rates are based solely on diagnosis – not the level or severity of disability. In fact, individuals with physical disabilities requiring complex ventilator care and other health related tasks like catheterization and tube feeding receive the lowest reimbursement rates (on average $17.41/hour).
H.R. 5902 funds Intermediate Care Facilities (ICFs) that are institutional and other settings that are currently being reviewed for compliance with federal rules to determine whether they are truly community-based.
The increased federal match in the Act is dedicated to funding Intermediate Care Facilities (ICFs) which are institutional settings that segregate individuals with intellectual or developmental disabilities. H.R. 5902 also allocates funds to other waiver-funded settings, however under rules published in 2014 by the Department of Health & Human Services, states have up to five years to ensure that community-based services are provided to people with disabilities in settings which conform to the requirements of the rule. Although funded under HCBS waivers, ID/DD services may be provided in congregate settings (comparable to ICFs) that segregate people with intellectual and developmental disabilities. At this time, it is unclear how many of those HCBS settings will still be considered “community-based” after the five-year review period is completed. Consequently, even the funds allocated for ID/DD HCBS may still be supporting segregation and isolation of people with intellectual and developmental disabilities.
H.R. 5902 creates a perverse incentive to promote institutionalization.
By increasing the Federal Medical Assistance Percentage (FMAP) for ICFs to 90%, H.R. 5902 creates a perverse incentive for states to institutionalize people with intellectual and developmental disabilities. Although the legislation would provide a 90% match for both ICFs and waiver-funded services for individuals with intellectual or developmental disabilities, states that use cross-disability approaches based on functional need or have selected the Community First Choice Option would receive less federal funding in the provision of HCBS than they would for institutionalizing individuals in ICFs. For example, even with the CFCO 6% enhanced FMAP, New York State would receive only 56% for CFCO services which are provided to any qualifying person with a disability, regardless of the nature, type, or severity of the disability, but would receive 90% for institutionalizing individuals specifically with intellectual or developmental in ICFs. The 34% difference is a strong – and perverse – incentive that promotes institutionalization.
H.R. 5902 fails to address any issues faced by other service providers in the Disability Community which need to comply with recent Fair Labor Standards Act changes to raise the salary level for exempt employees.
There are a significant number of disability service organizations that are being left out of this effort to mitigate the impact of the changes in the Fair Labor Standards Act related the classification of employees as exempt. These include waiver providers for services to physically disabled individuals, people with mental health disabilities, technology-dependent individuals, people with AIDS/HIV and people with severe and persistent mental health disabilities. The needs of none of these organizations are addressed in H.R. 5902. Additionally, other organizations – not funded through Medicaid – will also be impacted by the rule, but are left out of the bill. For example, Centers for Independent Living – federally-funded, cross-disability organizations that are run by people with disabilities and utilize a peer model – will be required to accommodate the FLSA changes within their grant-funded organizations. H.R. 5902 does nothing to address this.
H.R. 5902 fails to address catastrophic changes in the provision of Long Term Services and Supports which were initiated by changes to the Fair Labor Standards Act Companionship Exemption.
The Disability Community expressed grave concerns about the impact of the changes in the Fair Labor Standards Act Companionship Exemption. It is well-established that the right of people with disabilities to live in the community is threatened by a shortage of attendants to provide personal care or home health services. This shortage is caused, at least in part, by low wages that are being provided to attendants. Due to costs imposed by the Department of Labor’s regulations under the Fair Labor Standards Act (FLSA), states are either actively or passively limiting the hours attendants may work to avoid the additional cost associated with time-and-a-half of wages for overtime hours; this has further reduced the incomes of workers in an already-undercompensated sector. Additionally, it has destabilized the attendant workforce resulting in disabled individuals going without needed assistance, being denied the ability to make basic decisions about who come into their homes and see them naked being, or finding themselves forced into nursing facilities and other institutions.
Rather than assisting states to address the critical problems associated with implementation of the changes to the FLSA companionship exemption, H.R. 5902 imposes additional costs of resources and attention onto the vital services which these workers provide. It is deeply troubling to the Disability Community that the Congress is willing to pay 90% of the cost of implementing this burdensome system, but is unwilling to fund reimbursement at a level that supports the workforce necessary to ensure that people with disabilities are able to live and receive services in the community.
H.R. 5902 restricts access to Home and Community Based Services for Americans with physical disabilities and older Americans who need LTSS.
H.R. 5902 utilizes implementation of Electronic Visit Verification (EVV) as a way to pay for the enhanced ID/DD FMAP. Although it is assumed that the savings generated by EVV are due to fraud reduction, in fact the “savings” come from restricting access to home and community based attendant services. Interrupted phone service, language barriers, and other obstacles conspire to restrict access to much needed services. EVV simply introduces new hurdles to clear in order to secure payment for attendant services. Attendants – who lose pay because of these systems – are choosing to leave the field and seek other work where they can be assured of a full paycheck, exacerbating the shortage of workers and putting the freedom of people with disabilities at risk. As a consequence, H.R. 5902 literally takes money and services away from disabled people living in the community in order to give money to the operators of institutions which segregate us away from the community.
H.R. 5902 reduces the opportunity for community integration for Americans with physical disabilities and older Americans who need LTSS.
Electronic Visit Verification (EVV) is based on the false and outdated belief that people who use personal care or home health services are “homebound” because systems use a home phone to verify that an attendant has arrived or finished a shift. Today, attendant service users receive services and supports throughout the community. People may utilize their attendant services – at work, school or elsewhere in the community. Requiring that attendants start and end a shift at the individual’s home establishes a de facto “homebound” requirement on the individual and undercuts their ability to be integrated in the community.
Absent such requirements, people with disabilities and seniors who use attendant services are active participants in the social, economic, and political life of our nation and of the communities where they live. They work, attend school, go shopping, and participate in cultural, social, and community events. They also serve on boards of organizations, play sports, and contribute to the richness and diversity of our nation in ways great and small. Requiring EVV systems introduces significant obstructions to the integration, equality, and civil rights of people with disabilities and seniors, by introducing a disruptive and onerous government-mandated tracking system into their daily lives.
H.R. 5902 reduces the opportunity for self-direction by Americans with physical disabilities and older Americans who need LTSS.
Additionally, EVV systems tend to rely on a pre-determined schedule against which an attendant’s hours are verified. These systems are not designed for consumer-directed services where the individual sets their own schedule and may change it based on their own needs. Some states which have implemented EVV, have exempted consumer-directed services because of the consumer-directed nature of those services and the burden that EVV imposes on consumers who direct and receive those services. H.R. 5902 eliminates the ability of a state to make such determinations. The decision to utilize EVV – and how that is done in relation to consumer directed services – is rightly made at the State level and not with a broad brush by Congress.
H.R. 5902 potentially establishes States as joint employers of home health and personal care workers.
In addition to the above problems with EVV, H.R. 5902 may impose upon the States a significant liability in the form of joint employment. The legislation only clarifies that the EVV provider is not a joint employer of the attendants. If EVV is mandated for all personal care and home health workers who provide services through Medicaid, states may be found to be a joint employer of those workers under the FLSA. Because employers, including joint employers, are required by Federal regulation to pay FLSA overtime to personal care and home health workers, the States may encounter a significant financial liability for unpaid overtime costs. Because of the rules of joint employment, where the State is found to be a joint employer, it may be liable to pay overtime for any hours over 40 worked by the attendant through any number of agencies.
In other words, where an attendant provides 30 hours of personal care through Agency A to one individual, and 25 hours of care to a different individual through Agency B, by requiring a single EVV system for reporting tasks and checking in, the State may be liable as a joint employer for the 15 hours of overtime that the attendant has worked. The attendant may be able to prevail against the State in an FLSA action for failure to pay overtime. These details are not insignificant: it is not uncommon for attendants to work multiple jobs and long hours in order to make ends meet, in part because attendants’ wages are so low. H.R. 5902 must not be passed without careful consideration of the liabilities it imposes upon the States.
H.R. 5902 fails to address other serious problems with Electronic Visit Verification (EVV).
In addition to the problems with EVV in principle, many EVV systems have specific problems which this legislation does not address. For instance:
Some EVV systems use geo-tracking and effectively lock the individual at home, since the attendant will not be paid when the geo-tracking indicates that they have left the home, even if they have left the home in order to accompany the consumer on an errand. This is a form of house arrest and a violation of our civil rights as equal citizens.
Some EVV systems require our attendants to check in from a home phone number multiple times per day. This is a significant imposition on our community’s ability to live as equal citizens. It is based on the false and ableist assumption that our community is “homebound” and do not go out with our attendants to participate in community life.
Some EVV systems allow cell phones to operate as the point of contact, and call at random times. These systems intrude into the lives and privacy of consumers. At times, they require the consumer to hand her cell phone to her attendant against the consumer’s wishes. A consumer may forget to bring her cell phone with her when she leaves her home. A consumer’s phone may run out of battery life while the consumer is out. In this way, EVV systems create a presumption of fraud out of the vicissitudes of everyday life. In addition, calls are stigmatizing when consumers are called while at work or school. CDR is aware of at least one disabled student whose professor penalized her because she allowed her attendant to answer a verification call during a class lecture.
Some EVV systems require the use of voice recognition or speech recognition. These EVV systems discriminate against Deaf and non-English speakers. A consumer may prefer to use an attendant who speaks the consumer’s own language, such as ASL, Chinese, Spanish, Japanese, Portuguese, Yiddish, Czech, or any other language, and has the right under Federal regulations to specify that preference. In some cases, the attendant may not speak English at all, because English is not necessary for them to perform their work. Even when the worker speaks English, speech recognition or voice recognition may fail to understand their accent or pronunciation. This affects not only attendants with speech impediments, but also any worker who speaks English with an accent. For example, in Rochester, NY, the EVV system could not recognize “zero” when said by a Latino or Latina worker.
EVV requires States to redirect funding and attention from providing community-based services.
Although the EVV requirement includes significant Federal matching funds for the implementation of each State’s EVV system, the State is still required to provide some funding, to operate multiple workgroups on the design and implementation of the EVV, to conduct a procurement, to implement the EVV system and train agencies and workers on its use. At a time when the policy of the Federal Government is to increase community-based services for people with disabilities and seniors, H.R. 5902 requires States to spend considerable organizational resources creating an EVV system which burdens those very services.
For an example of the burden that H.R. 5902 imposes on the States: the requirement to use EVV systems forecloses alternatives that use peer review (i.e., a common written timesheet) which are more effective than EVV because they require sign-offs from multiple attendants and from the consumer. EVVs rely on the mistaken belief that electronic systems are more reliable or less able to be tricked than other forms of verification, when in fact phone numbers and other purely electronic systems are less secure than systems that require multiple people to sign-off. States should continue to have the flexibility to determine whether EVVs are right for their Medicaid systems or not, and whether they are right for all services or not.
In summary, for decades the Disability Community has petitioned the Federal Government to overturn the institutional bias in Medicaid by making community-based services available on an equal basis as institutional services. H.R. 5902 imposes a significant additional burden on the provision of community-based services, which burden is not imposed on institutional services, while at the same time increasing Federal funding for institutional services. Should H.R. 5902 be passed into law, it would significantly obstruct the equality and civil rights of people with disabilities, and would further entrench the institutional bias which segregates our community and prevents our people from participating in the promises of America.
For all of these reasons, we strongly oppose the passage of H.R. 5902.