Myth: The Department of Labor says that Medicaid and Medicare rates will increase and offset the additional costs associated with these changes.

Fact: States can’t afford to increase Medicaid rates to cover these costs and the Obama administration has proposed cutting Medicare, so rather than giving attendants more money, their take home pay will be cut.

Myth: The Department of Labor says this rule change won’t have a significant impact on people with disabilities based on the experience of other states that have implemented similar requirements.

Fact: When you’ve seen one Medicaid program, you’ve seen one Medicaid program. They are all different. Many of the states that require time-and-a-half for hours over 40 in a week authorize very limited amounts of in home assistance. Consequently, there are not a lot of hours for attendants to work. This change will have a devastating impact on states where people with significant disabilities are able to get larger numbers of hours – particularly New York and California.

Myth: People with disabilities are just continuing the oppression of workers – just like everyone else in "management".

Fact: The relationship between people with disabilities and attendants is unique, particularly in consumer directed programs. It is not a traditional "labor – management" relationship. People disabilities depend on their attendants for their daily lives and their freedom, so they value their attendants more than anyone else does. 

Myth: The Department of Labor says that it won’t enforce these rules on private pay individuals, so concerned about these rules, making travel with an attendant unaffordable are not valid.

Fact: People who privately pay for attendant services are not the only ones who travel, and these rules will make traveling for Medicaid recipients unaffordable. Because they will be required to pay for all hours "worked" home care agencies will refuse to allow attendants to travel. This would prevent people disabilities from traveling any distance for medical and rehabilitative services (as in rural, frontier and tribal communities), participating in a conference, visiting an infirm or dying relative, or going to a family reunion.

Myth: The Department of Labor and advocates for these changes have suggested that the disability community is overstating our concern that people with disabilities will be institutionalized because of this rule change.

Fact: It was, in fact, the Department of Labor that identified this issue as part of its original analysis. As part of its analysis of the fiscal impact of this rule, the Department of Labor suggested that the cost of implementing this rule would be decreased because some people would seek less expensive alternatives, including institutionalization. In fact, the Department of Labor identifies this TWICE in its analysis of the proposed rule. Analysis that the Department has done, after the fact, minimizing this concern seems motivated at eliminating this justifiable concern and is not considered credible within the disability community. To put this in colloquial terms, the Department of Labor simply cannot "unring that bell".

Myth: The Department of Labor sees all "home care" services as being the same.

Fact: In fact, there are a lot of differences between the different types of community-based services and supports. Although the Department of Labor uses the terms interchangeably, there are significant differences between home health care, personal care and consumer directed personal assistance services. In doing this, to the uninformed, it appears that the Department has produced a coherent case for their position. For those who understand the various services and supports that are provided, it is clear that the Department of Labor simply selected the facts that best supported their case, as opposed to evaluating the impact that this rule would have on each of the different systems. 

Myth: This change doesn’t effect that many workers.

Fact: Although the Department indicates that only 8 to 15 percent of attendants work overtime, consumer directed programs report far higher numbers of attendants working more than 40 hours a week. This suggests that the proposed rules will disproportionately impact people with disabilities in consumer directed programs. Given that the Department didn’t evaluate the impact on consumer directed models, this suggests additional research is necessary for finalizing the role affecting these programs.

Myth: Consumer directed services are an incidental part of the system, so the impact of these rules on that system isn’t very important.

Fact: Consumer directed services are a well established, vital component of many Medicaid programs serving people with disabilities. Often, people with significant disabilities who want to live in the community choose consumer directed services because they offer greater flexibility. These services originated in organizations that were run by people with disabilities, often people who use community-based long-term services and supports. Because these organizations understand the unique relationship between attendant service users and attendants, they are very different from for-profit home care agencies that take advantage of workers.
 

Myth: Consumer directed services are an incidental part of the system, so the impact of these rules on that system isn’t very important.

Fact: Consumer directed services are a well established, vital component of many Medicaid programs serving people with disabilities. Often, people with significant disabilities who want to live in the community choose consumer directed services because they offer greater flexibility. These services originated in organizations that were run by people with disabilities, often people who use community-based long-term services and supports. Because these organizations understand the unique relationship between attendant service users and attendants, they are very different from for-profit home care agencies that take advantage of workers.

Myth: People with disabilities who use attendant services don’t mind having different people come in and out of their home and assist them. They are used to it.

Fact: Attendant services are not impersonal. Attendants assist very personal tasks, including showering or bathing, dressing, and toileting. People with disabilities who cannot independently get in and out of bed may be required to give attendants keys to their home. Like everyone else, people with disabilities prefer to limit the number of people who see them naked, touch their bodies and have keys to their home. The Department of Labor, in its analysis, acknowledged that people with disabilities and seniors prefer to have the same caregiver(s), rather than a sequence of different caregivers. However, the Department of Labor dismisses this concern by pointing out that there is a high turnover rate in home health care. The turnover rates in consumer directed models are far different and people may work together for many years. These proposed rules will destabilize long-standing and incredibly close relationships between attendants and the people they assist, particularly these consumer directed programs.

Myth: The Department of Labor described consumer directed services "as a ‘grey market;’ that contains an element of ‘over-the-back-fence network of women [who are] usually untrained, unscreened, and unsupervised, but more affordable without an agency’s fee, less constrained by regulations and hired through personal recommendation.’ The term ‘grey market’ is sometimes used to suggest that at least some of these private arrangements are designed to avoid applicable labor laws…"

Fact: The Department dramatically mischaracterized the nature, scope, and intent of consumer directed (also referred to as self-directed) personal assistance and minimizes the role of the consumer (or their designated representative) in that model. Characterizing consumer directed services, in this fashion, demonstrates that the Department of Labor not only failed to understand these unique services, but is outright hostile toward consumer direction.

Myth: The Department of Labor asserts that "there is no consolidated source of data on state consumer-directed programs".

Fact: There is a great deal of expertise on these programs within the disability community. Aside from the National Council on Independent Living and ADAPT, other national resources include, The Center for Personal Assistance Services, The Center for Self Determination, and The National Resource Center for Participant Directed Services. There is also expertise within the Administration. It is clear from their analysis, that the Department of Labor did not afford itself the opportunity to engage any of these resources. Consequently, it never evaluated the impact of these proposed changes on this model service.

Myth:  Only a few unhappy people within the disability community are complaining about this issue.

Fact: ADAPT and the National Council on Independent Living have spear-headed this issue.  They are disability led organizations with grassroots constituencies across the country. Both organizations have attendant service users in their leadership. Additionally, the National Council on Disability has weighed in on this issue. NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD has urged the administration to utilize a negotiated rule-making process or use the ADAPT-NCIL compromise as a way to bring the disability community to the table in developing changes to these rules.  Here's a link to the NCD letter:  http://www.ncd.gov/publications/2012/DOL10012012/  Additionally, the same concerns are being raised by states, their Medicaid Directors and the organizations that represent them in DC.

Myth: The disability community is simply trying to stop these changes.

Fact: ADAPT and the National Council on Independent Living, which have led this effort, have proposed a compromise that would allow President Obama to keep his promise to modify these rules, while holding consumer directed programs harmless from the changes. The ADAPT-NCIL compromise would simply eliminate the exemption for third party employers, treating Medicaid consumers who function as the employer under a common law assessment, as private employers. This change, alone, would eliminate the companionship exemption for 70% of home care workers, while minimizing the negative impact on people with disabilities. This would then allow the Department of Labor to sit down with representatives from the disability community to craft additional changes to the rule in a manner that minimizes the negative impact on people with disabilities.

Myth: The unions and worker organizations would never agree to the ADAPT-NCIL compromise.

Fact: The necessity to balance efforts to enhance workers’ wages and benefits with the needs of people with disabilities was identified and addressed in Guiding Principles which were developed between SEIU and disability advocates.  According to those Guiding Principles, signed on November 16, 2011, "As a general principle, enhancements to workers’ wages and benefits shall be paid for through increased funding." The changes proposed by the Department of Labor are inconsistent with this principle.

One Response so far.

  1. Pez says:

    Needs some editing but overall a great job of writing!

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