Threat to IHSS Personal Care Hours

ADAPT was at the Hall of States requesting that the National Governors Association support a resolution postponing implementation of new Department of Labor Rules. The resolution also asks that the DOL meet with the Governor's and persons with disabilities to review and hopefully revise these rules. 

The new DOL rules will require that attendants of persons with disabilities receive overtime for all care they provide that is in excess of 40 hours a week. Previously, these attendants were exempt from these rules. We believe these rules will hurt persons with disabilities because they will be forced to hire new attendants for hours of service they need which are in excess of 40. Attendants often perform very personal and intimate care. Persons with disabilities develop very close and trusting relationships with their attendants that span many years. Being forced to hire strangers to provide intimate care that is in excess of 40 hours a week can be traumatic. Attendants may be hurt because states likely can't afford to offer overtime in their Medicaid rates and they will receive less money as their hours are cut from to a strict 40 hours a week. States will suffer from pressure to provide overtime for attendants for the reasons mentioned above, which they can't afford to do. Accordingly, we believe this is one area where the interests of the governors/states and persons with disabilities align.

Representatives of the Governors Asssociation met with leaders of ADAPT. They agreed to put our resolution to a vote of the Governors and get back to us with the results within two weeks.

The Personal Impact of Proposed DOL Changes

Here are two personal stories that explain the unintentional, but serious impact that the proposed Department of Labor changes will have on people with disabilities and attendants.

Shelly’s story

I am concerned about the Department of Labor’s proposed change for attendants. I am in a consumer directed personal assistance program and Medicaid doesn’t pay enough for overtime so this change will just cap the hours my attendants can work each week for me.

I have Cerebral Palsy with a speech impediment and it's very hard to find attendants who understand my speech and understand me as a person. I have wonderful attendants. They have worked with me for six years or more. Because I have had these attendants so long, we are very close. They don’t just understand my speech; they understand me. And they often know what I'm saying before I even finish my sentences. And I know and trust them.

These attendants work over 40 hours a week. If this change goes through, I will have to cut their hours and hire two more attendants to cover my hours. That sucks.

How would you feel if someone walked up to you one day and told you that now instead of having a few close attendants do your personal care, you're now going to have five people. That’s five people you have to coordinate schedules with. That’s five people in and out of your home. That’s five people looking at you naked. Touching your body. Wiping your butt. I don’t want that, and I’m sure you wouldn’t like it very much either.

Not only that, I will have to give out more keys to my apartment. That’s more people who can come and go whenever they want. Honestly, I don’t like a lot of people having my keys. I don’t feel as safe like that. Maybe you think there is something wrong with me, but I have good reasons to feel this way. I was in a state run institution and I like being able to lock my door and trust that someone isn’t going to come in without my permission.

When I was in the state institution, the government controlled my life and made decisions about my body. I got out and have taken control over my life. I decide who and how many people touch me. That’s how it should be. I worry about what’s going to happen to me, but I am also worried about my attendants. This change will really hurt them. I don’t know how they will pay their bills if this goes through.

The government has decided it knows what’s best for us. 
Well, it doesn’t.

Nikki’s story

I’m an attendant and I've just heard that the federal government is trying to “help” me by changing labor rules, but their new rules don’t change Medicaid rates so I won’t be able to keep working 56 hours a week.

All 56 hours are with one person. I work in the consumer directed program and we’ve been together for six years. Working for her isn’t like working in a factory or hospital. I provide personal care, but we also hang out and have a good time together.   
This change won’t help me. 
In fact, it will hurt me financially. 
I will lose 16 hours of pay each week.

So here is some simple math to show you what that looks like.

I make $11.20 an hour. 
$11.20 x 16 hours/week = $179.20 a week.
I will lose that from my paycheck. Every week.

Let me make this picture even clearer for you. 
$179.20 x 52 weeks/year = $9,318.40.

That is almost $10,000 a year I will lose. 
It’s like one-third of my income. Gone!

I am a very frugal person, but even the most frugal person can’t pay their bills if they take a $10,000 a year pay cut. How would people at the Department of Labor deal with losing one-third of their income?

This is just complete bullshit, and the government is truly overstepping its boundaries. Once again, government bureaucrats are trying to put their noses into business they have no clue about.

I am going to lose hours helping someone I am close to, and will have to go work with someone else to make up for it. Probably several people. And my current hours are going to be given away to other people. That doesn’t make any sense.

There’s a reason the consumer directed program exists. It gives the consumer the power of managing their personal care hours. If someone feels comfortable with only two people, and they decide they want people to work 50 hours or more a week, why are you going to intrude on their rights?

All I can say is please rethink this proposal before you make a decision that is going to devastate many people’s lives, consumers and attendants alike.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.   To learn read more ADAPT or read more personal stories of people affected by the proposed DOL changes go to