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Call To Action: Personal Assistance Program in Jeopardy
Call To Action: Personal Assistance Program in Jeopardy
CALL TO ACTION !
TO PROTECT THE PRIVACY OF INDIVIDUALS WITH DISABILITIES & THEIR CARE GIVERS
- A new federal law has been enacted that poses perhaps the most serious threat to the independence of people with disabilities in decades. The 21st Century CURES Act Section 12006 enacted December 2016 mandates that states implement electronic monitoring of people with disabilities receiving In-Home Support Services (IHSS) and their caregivers.
- This onerous law is being implemented across the country with a January 1, 2018 deadline, or states face cuts to their already strained Medicaid funding.
- ELECTRONIC VISIT VERIFICATION (EVV) is an electronic tool used by the state to monitor the location and activities of IHSS workers and individuals with disabilities who require help with daily activities to avoid institutionalization. This can include geo-tracking or GPS. EVV attacks the rights, privacy and freedom of movement for people with disabilities and their workers (who are often family members).
- As states implement EVV during 2017, there is an alarming trend toward states utilizing placement agency models, instead of the individual personal care provider model which predominates in CA. This trend shifts control away from consumers (and independent living) toward placement agency care (aka off-site nursing home care).
CALL & WRITE YOUR SENATORS AND ASSEMBLY MEMBERS
ASK THEM TO TAKE A STAND AGAINST SURVEILLANCE of DISABLED PEOPLE IN OUR OWN HOMES and IN OUR COMMUNITY! ASK THEM TO DEFEND OUR CIVIL LIBERTIES and SUPPORT THE HOMECARE WORKER UNIONS THAT ARE AGAINST EVV!
- Instead of using this federal funding to raise the pay of home care workers above minimum wage, or to provide health care services to families and people with disabilities, EVV will funnel this give-away of hundreds of millions of dollars to private companies to surveil people who already struggle with the needs of everyday living.
- This new federal law undermines the civil rights that the disability community and our allies have fought so hard to establish over many decades. Now we are fighting again against this costly boondoggle to protect our rights to self determination, freedom of movement, and the ability to be active in our communities and to participate in civil life.
ELECTRONIC VERIFICATION IS THE OPPOSITE OF INDEPENDENT LIVING AND CONSUMER CONTROL. Some states are starting to require that, to facilitate monitoring, people with disabilities must stay at home to receive In-Home Support Services.
- The National Council on Independent Living (NCIL), which opposes this law, reports that EVV systems basically place people with disabilities under house arrest because they’re constantly monitored when they’re with their personal care workers. “This requirement, which appeared last minute in a markup will only serve to harm people with disabilities and seniors and is little more than a handout to EVV companies.”
- This electronic surveillance mandate discriminates against seniors and people with disabilities who need to use home health services. It relies on prejudice and stereotypes that we are helpless and homebound. To the contrary, the civil rights laws passed in the last thirty years for people with disabilities mandate that we are have the civil right to equal participation in our communities. In-Home Support Services are intended to support us to be part of society, not to keep us prisoners at home so that we and our care workers can be monitored by the state.
- All of the progress we’ve made in making our country more accessible under Americans with Disabilities Act is useless if we are restricted in our ability to leave our homes.
OUR HOMES CAN NOT BE TURNED INTO OUT- CALL NURSING HOMES
- The National Council on Independent Living reminds us that “People with disabilities and seniors who receive services are students, employees, volunteers, athletes, artists, consumers, and voters. We speak many languages; we go many places; we participate and add to the richness of our communities. Beyond our opposition to the EVV requirement on principle, we oppose this requirement because our lives are not congruent with EVV systems, which are essentially government tracking systems for Americans with disabilities and seniors.”
- EVV WILL CHANGE THE RELATIONSHIP BETWEEN PEOPLE WITH DISABILITIES AND CARE WORKERS. Independent living and consumer control of our lives means that we and our care givers work closely together. The individual with a disability trains and directs workers in achieving our daily living goals.
- With EVV, the state steps into the middle of this relationship, usurping the role of the employer with a disability. EVV MAKES workers divert precious time with consumers to instead entering electronic data about very personal activities. Consumers can find this invasion of our privacy humiliating as it gives information about hygiene and bodily functions through electronic methods that are not secure from hacking.
- Turning this employer relationship on its head, EVV tells workers they are responsible to the government more than to the person with a disability, and that the disabled person may be less than competent. EVV portrays the person with a disability more like a patient in the medical model, and undermines the very essence of consumer-driven independent living. Loss of this consumer control will force many back into institutions
- EVV will be more compatible with home care placement AGENCIES than with individual workers whose only priority is the consumer that hires them. This default to agency placement of workers in the home will undermine consumer control. Agency employees will follow agency rules instead of directions given by the consumer.
- EFFECT ON PROVIDERS - EVV imposes new stringent requirements on IHSS providers that didn’t exist before. Learning how to use EVV technology will be a challenge for many workers and put more pressure on their time, whose pay will not be raised to match. Following monitoring requirements is inherently burdensome. As any consumer or provider can attest, the type and duration of services performed changes daily. Having to report every detail to the state is onerous and makes the job harder.
- Consumers face huge challenges recruiting and retaining quality homecare workers. There are never enough people willing to do the work for the low pay. EVV will only exacerbate the shortage of workers and make it more difficult for consumers to remain safely in their homes. At minimum wage, many workers live on the brink of homelessness, and they often face delayed payment from the state. EVV adds more hoops to jump through, and will be off-putting to those who might seek this employment.
- Electronic Verification is NOT More Effective and is less secure against hacking than existing paper Peer Review Systems. A written timesheet with sign-offs from attendants and the consumer effectively verifies that a shift has been completed, and also keeps the consumer’s confidential personal information safe from electronic hacking. So, why must be millions of dollars be squandered in a giveaway to high-tech organizations that would spy on us in our homes instead of providing care for us?!
- Missouri appears to exempt Consumer-Directed Personal Assistance (CDPA) services from EVV, what can we learn from this model?