Hi everyone,

You may have gotten the Action Alert yesterday, but have not gotten to doing it yet.  If not, I just wanted to send one more note to emphasize how important this alert is.  Below is a more detailed explanation of exactly why:

Despite assurances during the Presidential campaign that the administration would work with the disability community to resolve the problems with the proposed changes to the companionship exemption, the administration apparently intends to release these rules around Labor Day, knowing that they will result in the institutionalization of people with disabilities and reduce the earnings of attendants.




Last week, Secretary Perez held a listening session about the proposed changes to the companionship exemption.  Disability groups from around the country were represented and every national disability organization expressed concerns similar to ADAPT.  While ADAPT applauds the Secretary for holding this listening session, listening – alone – isn’t enough! 

Every group – including ADAPT – was allocated three minutes to explain its concerns.  Building on the Department of Labor’s own analysis that said these rules would result in institutionalization, ADAPT identified 12 ways these rules would result in the institutionalization of people with disabilities.  That meant we had exactly 15 seconds to describe each of them – assuming no time was spent on introducing ADAPT, thanking the Secretary or making other important points. 

This issue is complex.  It requires more than three minutes of explanation.  It is also critical to the lives of people with disabilities and can’t be reduced to simplistic sound-bytes if we want to formulate policy that makes sense for both attendants and attendant service users.

An interesting aspect of the meeting was that everyone basically acknowledged attendants would NOT see increased earnings.  There is a growing understanding and acknowledgement that the hours attendants will be allowed to work will get capped under these rules.  So the discussion has shifted to determining WHICH attendants the caps will likely apply to and HOW those hours will be capped.

There seemed to be some interest in exempting family members who live with an individual who has a disability but even with that change, the proposed rules will still cap the hours of other “family and friend” attendants and result in the institutionalization of people with disabilities.  Here are some examples:

  • Maria has a daughter with a significant disability who receives round-the-clock assistance.  Because she is in New York, she isn’t allowed to be paid in the consumer-directed program to provide assistance to her daughter, but hired her sister and a couple other family friends who know her daughter well and are particularly able to meet her needs.  Under the proposed rules, these three women would have their hours capped and Maria would need to hire two additional workers.  Because her current attendants wouldn’t be able to maintain their current income, Maria knows she will likely lose at least two of them.  Maria worries that, with these services disrupted, she may be forced to institutionalize her daughter.
  • Ann’s mother has moved in with her and receives consumer-directed personal assistance through Medicaid.  Ann is happy to have her mother live with her because she is able to hire her daughter and a niece and who don’t live with them to come in and assist her mother.  Under the proposed rules, Ann would need to find additional attendants and – although she loves her mother – she doesn’t want to have strangers coming in and out of her home.  It isn’t just how she feels, but how her husband feels as well.  He doesn’t want to lose his privacy and is concerned that having strangers in their home potentially creates opportunities for theft.  If they can’t hire family and close friends, they have agreed that Ann’s mother will need to go into an institution.
  • Jason is a quadriplegic who lives in the city.  When he first started using consumer-directed services, he had a lot of different attendants who just didn’t work out.  His friend Mark and another friend from school had filled in and provided him with personal assistance between these workers.  Then one day, Jason realized that part of the problem he had with other attendants was that none provided the same level of assistance he got from his friends, so he hired both friends as permanent attendants.  Both guys work more than 40 hours, and couldn’t afford to live on 40 hours of attendant wages.  Under the proposed rules, their hours would be capped and Jason would be forced to hire a significant number of new attendants.  He worries that he won’t be able to find the attendants he needs and will be forced into an institution.
  • Jonathan uses a ventilator and has three regular attendants who cover most of his shifts; two work the majority of the hours.  He has had these attendants for over 20 years and trusts them implicitly.  Because they aren’t family and don’t live with him, their hours will be capped at 40 under the proposed rules.  This means that he will need to find and hire additional attendants and the earnings for the attendants he has will be cut.  Jonathan is worried that he won’t be able to get attendants who are as skilled when their weekly paycheck is nearly half of what he’s been able to pay these long-term attendants.  If he can’t make it work, he knows he will end up in a nursing facility… or even worse.

Virtually everyone agrees that Medicaid will not cover time-and-a-half wages for attendants so these rules will likely result in caps on the hours attendants can work.  That means a reduction in the available workforce.  ADAPT, NCIL and other national disability organization recognize that reductions in the available workforce will hurt people with disabilities who receive Medicaid-funded personal assistance.

Because the Department of Labor will not enforce these rules on households which privately pay for attendants – these employers will still be able to offer large blocks of hours which will further erode the workforce available to Medicaid recipients.

Although some groups have been hopeful that the meeting with the DOL Secretary signaled a turn-around on the proposed rules, we continue to hear that the Obama administration intends to release the rules – as written – around Labor Day.  Folks in the administration are saying that they can still go back and “clean things up” after the rules are released. 

Instead of releasing rules that need to be “cleaned up”, so the President can have a big PR event on Labor Day, the Obama Administration should commit to working with the disability community and worker organizations to develop rules that make sense in the first place!

Even if you’ve taken action before, we are targeting some additional people, so send your message now!



Thank you,Dean DeRusso
Deaf Systems Advocate
Regional Center for Independent Living (RCIL) 

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