Two disability rights powerhouses, ADAPT and the American Association of People with Disabilities, now find themselves on opposite sides of a divisive dilemma about how personal assistance is managed and funded throughout the United States. They are squaring off over the Department of Labor’s recently adopted “Home Care Rule,” which says all personal assistants must be paid minimum wage and time-and-a-half for overtime.

ADAPT claims that, at least right now, no good can come of this rule because it might rob dollars from existing programs and cause loss of attendant care hours for those most in need of personal care. AAPD says implementation of the rule may not be easy, but if we can’t create a more stable workforce — and overtime is key to that — a lack of attendants could force more people who need help into nursing homes.

In February, AAPD filed an amicus brief supporting DOL, putting it squarely opposite ADAPT’s position. Not a comfortable place to be, but AAPD says it received sufficient assurances from the government that workers can be fairly compensated without consumer hours being cut.

It all came to a head on March 11, the date of AAPD’s annual gala. Held in the heart of the Washington, D.C., beltway, the organization’s signature event is where advocates, corporate sponsors and elected officials gather every year to rub elbows, celebrate the recipient of the Paul G. Hearne Leadership Award and the year’s legislative victories. Platinum sponsors include corporations such as American Airlines, JP Morgan Chase and newcomer Uber.

At a meeting held earlier that day, mere hours before the gala, AAPD promised ADAPT and the National Council on Independent Living it would withdraw its brief in support of the DOL rule, but then refunded the tickets of all known ADAPT activists who planned to attend the ball. Furious, activists demanded to know why.

Turns out, that brief hadn’t been withdrawn after all.

As board members became aware of the mishandling of the conflict with ADAPT, AAPD was thrown into turmoil. The executive director of AAPD, Mark Perriello, was either fired or encouraged to resign, along with Henry Claypool, who was vice president of policy. A number of board members resigned as well.

Like most dilemmas involving the government, this one is all about funding. Currently most home care programs, funded through a mix of state and federal dollars, can’t afford to pay overtime. The federal money flows from Congress through CMS, which signals it is willing to approve higher rates for overtime, but would all the states follow suit? Or, would people with disabilities in some states have their hours cut so personal care agencies can afford to comply with the rule, should it survive current court challenges?

As complex as the dilemma is, it isn’t just about policies and rulemaking. It’s about the real lives of real people whose independence depends upon personal assistance.

Interdependence of Attendant Care Relationships
Meet Theo Braddy, 54, a C4-5 quad who lives with his wife and children in Harrisburg, Pa. Injured in high school, Braddy first started using personal assistance while an undergrad at Edinboro University. He’s also executive director of the Center for Independent Living of Central Pennsylvania, which runs a personal assistance program called Home Care for Living Well.

Before we can begin to understand the impact of the Home Care Rule, says Braddy, we’ve got to understand the mutual dependency of the consumer-personal assistant relationship. It’s not the typical manager-worker scenario.

“Keep in mind you spend some of the most … intimate isn’t the right word. You spend time together doing the most personal things, so how can you not develop a friendship? It becomes very difficult when that relationship crosses the line and the attendant wants to treat you as a friend instead of boss,” he says.

The problem is, many personal assistants are impoverished, and this affects their ability to do their job.

[See below: Who Are Our Workers?] But if they can’t do their job, people who depend on them, like Braddy, may not get out of bed that day.

“Here’s a typical situation,” says Braddy. “You don’t drive, and you need something and the attendant doesn’t have money. They also need gas money and you know if they don’t get it you aren’t going to get up that morning. What are you going to do? You’re going to give them that money. And when you do that, you’ve crossed the line. A lot of times the attendant leaves, owing you money, and there’s nothing you can do about it. That’s happened to me.”

On the other side, Braddy’s primary attendant for the past nine years, Brittany Hall, says it’s difficult to survive on what personal assistance programs pay.
Hall, 27, recently became the program director for CILCP’s attendant care program. The job provides much better economic security than the personal assistant’s salary she used to live on. She’s also the one who gets Braddy up in the morning, since he couldn’t find anyone else he could depend upon. The income from her new job, plus the hours she works for Braddy, has dramatically improved her quality of life.

“I just moved out of the ‘hood’ last month,” says Hall. “There were a lot of drug dealers, a lot of drama. It was nerve wracking. I didn’t get home until it was dark. I’d leave in the morning before it was light, take my kid to daycare, and you never knew what would happen in that neighborhood. A lot of my neighbors have had their cars and houses broken into. I pretty much went in the house, came out, got in the car, never took my daughter outside.”

That’s not living. Why did she remain an attendant for so long? Hall says it’s her chosen vocation. “For a lot of people it might be a paycheck, but how can you not get connected to the people you serve? As a CNA they teach you don’t get involved. But Theo’s been in my life longer than any other man.”

She went back to help Braddy when his morning attendant fell through, even though she now has a better paying job — that Braddy’s mentoring helped her obtain. “He needed me so I came back,” she says. “And as hectic as it is to get up at 4:30 a.m., get my daughter to daycare, get Theo up, go home, get me up for work … it’s exhausting … but how can I say no?”

Not many good personal assistants stay in the field long, given the hours and the pay. But like Hall, those who do are often quite dedicated. So why not pay them more so they can afford to keep working in people’s homes? And why on earth is it so controversial to pay them overtime?

It comes down to the rate agencies receive from their states to provide personal assistance.

No State is Like Any Other
Braddy’s CIL receives roughly $18 an hour from the state of Pennsylvania to provide personal assistance. The attendant earns between $10.75 to $11.50 of that, depending on variables such as job performance. Taxes, Social Security, workers comp and allowing attendants some vacation days take about $4. That leaves around $3.75, about $1 of which goes toward the in-office staff who administrate the program. The rest goes to rent and things like TB tests and clearances. In the end the CIL clears about $2. But the program would need much more than $2 an hour to pay for time-and-a-half on a wage of $10.75 an hour.

In Texas, consumers and attendants march side-by-side trying to budge the pay for personal assistants up to $10 from $7.86 an hour. The community has produced a YouTube video on the issue and in it, Dolores Carrillo shares how she can only afford to be an attendant because she receives food stamps. “They need to improve on the pay because I can’t pay my bills,” said Carrillo in the video. “If I were to choose to work in an institution I could start at almost $10.”

Arizona Bridge to Independent Living is doing everything it can to better compensate personal assistants, typically between $9.50 to $11.50 an hour, depending on the level of care a person needs. Plus, new this year, ABIL also provides basic health insurance. How are they doing it? “Well the jury’s still out, because we just started providing health care in January,” says Gwen Dean, vice president of personal assistance services for ABIL. “We’re not sure what it will end up costing us yet, but it’s a bunch. We have restructured our administrative staff, we’ve not hired staff that we could have — or that we needed to, frankly. We’ve cut back on everything we could possibly cut back on.”

Between recession-era cuts and looming expectations to provide health insurance for all full-time employees, including attendants, as required by the Affordable Care Act, ABIL is maxed out. So an overtime policy? Not possible.

Most of ABIL’s consumers get about 20 hours a week, and often the attendants are family members. Not many people, including quads, get much more than 40 hours, but they’re the ones who’d be affected by the new rule. “If you have 43 or 45 hours, something like that, you’d have to send somebody else in for the additional hours,” says Dean, who doesn’t see how her agency would be able to pay for overtime.

Pennsylvania, Texas and Arizona are very different states. Yet they are representative of most around the nation who are adamant that if they are forced to pay attendants overtime, both consumers and attendants will be hurt.

We’re the Government, We’re Here to Help
Right now, there’s a court injunction on the DOL’s Home Care Rule — the result of the lawsuit ADAPT and AAPD are at odds about. But if Braddy’s CIL is forced to pay time-and-a-half at the current rate, overtime hours would not be affordable and could not be approved. Right now many full-time attendants make ends meet by working more than 40 hours a week. With the rule in effect, if a person with a disability uses, say, 45 hours of services a week, rather than pay overtime he would have to hire an additional attendant for that extra five hours. But not many attendants will be interested in a job that’s only five hours a week.

Budget-conscious critics might ask why that disabled person cannot get by on 40 hours of care a week instead of 45. Perhaps they are not aware that this seemingly modest cut in hours might mean one less bath or meal a day. These are the types of choices many fear will be made if overtime becomes mandated.

Early on there was a community-wide panic attack when the Department of Justice seemed to suggest it would be OK to allow the hours of program participants to be cut in order to pay for overtime. But now the DOJ has put in writing that cutting hours of care in order to pay workers more is not OK, and probably not legal.

CMS quietly whispers to advocates and agencies that it will approve higher rates to allow for overtime. And officials in some states — off-the-record — say all they have to do is “throw a switch” and the overtime rate will happen. But if this is true, why are the bureaucrats so tight-lipped about it? Why not put it in writing? Why won’t CMS and state officials stand up and say it out loud?

AAPD Board Member Speaks Out
AAPD board member and United Spinal general counsel Jim Weisman sent an email to the National Disability Leadership Alliance venting his frustrations with how this whole controversy has unfolded. Like most AAPD board members, he was unaware AAPD had even submitted an amicus brief supporting the DOL’s Home Care Rule. “In fact, when ADAPT won in the lower court I sent [national ADAPT organizer] Bruce Darling a congratulatory email. Had this been brought to the board, I would never have supported appealing a victory by a disability group. AAPD should not oppose people with disabilities attempting to protect themselves and others with disabilities from harm.”

Yet even so, Weisman supports the rule and wants it to be implemented. To explain why, he shared a story about how, in the ’70s, he and fellow legal services lawyer Paul Hearne, who founded AAPD, were approached by a mother whose son was being bullied in school because he was deaf. “We told her that her son should be mainstreamed — that we would get the school to protect him. She left unhappy and unsatisfied. We knew we were exposing her child to possible harm — but we did it anyway, in the name of mainstreaming. Essentially, her child was grist for the civil rights mill. We were serving a higher purpose, we assured ourselves.”

Demanding that attendants be paid fairly mirrors the fight for sheltered workshop employees to be paid minimum wage, according to Weisman. “Disability advocates have pushed to eliminate the exemption from the Fair Labor Standards Act for people with disabilities involved in sheltered work that permits these disabled workers to be paid less than the minimum wage,” he says. “When advocates, including me, are told if wages in sheltered work are raised there will be fewer jobs for those people with disabilities that need sheltered work placement, we push ahead anyway.”

He cited these examples to explain why even though AAPD probably should not have submitted that brief in the first place, it would be a greater wrong to withdraw it.

“Home care must come into the 21st century. Workers must be paid fairly. Home care workers are vital to community involvement and integration for some people with disabilities. Home care should be a career choice and not employment of last resort, as it has been for generations. Fair pay is essential to this process.”

Some advocates feel our community ought to be pushing harder for specific written assurances that rates will be adjusted and consumer’s hours will not be reduced. AAPD already has received an assurance directly from DOL Secretary Thomas Perez: “In the Department’s outreach efforts since promulgation of the rule, we have consistently emphasized the importance of upholding the twin principles of protecting the rights of workers and supporting the individuals who rely on home care services by not interfering with the models of care that allow them to stay in their homes and communities.”

To those who quietly support the Home Care Rule, Weisman has a message: “I have heard from many of you in the disabled community that you agree achieving fair pay for workers is essential if we are to develop home care capacity for people with disabilities who are living longer than ever before and want to remain in the community, and for aging baby boomers. Not one of you has spoken up publicly.”

What Happens Now?
There is consensus that personal assistants ought to be better compensated. No one wants to deny them overtime pay, benefits or any of the other perks most other American workers have, but the devil, as they say, is in the details. And the details are what ADAPT sees as the problem.

Is ADAPT correct that, right now, paying personal assistants overtime will cause many people to have their hours cut, and possibly even be forced back into institutions? Or is AAPD on the right track in stating unequivocally, although initially quite clumsily, that the time has finally come to force the issue of better compensation for personal care workers?

So much is at stake — not only the livelihoods of personal assistants and the families that depend on them, but also the freedom and independence of people with disabilities who rely upon personal assistance in every state in our union.

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Who Are Our Workers?

As of 2011, the average personal care assistant in the United States is a woman (87 percent). Although whites make up the largest bloc (47 percent), it’s more likely she is either black (30 percent), Hispanic (16 percent) or “other” (7 percent). There is a 23 percent chance she wasn’t born in the United States.

She probably works full time (53 percent), and her average income is $14,000, although that amount takes part-time salaries into consideration. She earns $9.57 an hour, and is between 44 and 48 years old. Most likely she’s only been to high school (54 percent) and there’s a good chance she receives public benefits such as food stamps (49 percent).

The demand for her services was expected to rise by 71 percent between 2010 and 2020. So far that growth is on track.

These stats are from the Paraprofessional Healthcare Institute (phinational.org).

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DOL Home Care Rule Timeline:

First promulgated in 2013, the Home Care Rule immediately faced court challenges. Currently it is supported by one powerful disability group and opposed by another.

Sept. 17, 2013: The Department of Labor announces home care workers will be protected by the Fair Labor Standards Act starting Jan. 1, 2015, which means they are to be paid minimum wage and overtime. The Home Care Association of America and other plaintiffs file a lawsuit against the “Home Care Final Rule,” preventing it from taking effect.

Dec. 22, 2014: The U.S. District Court for the District of Columbia, ruling in Home Care Association of America v. Weil, strikes down DOL’s rule requiring overtime for personal care attendants hired through third-parties such as personal care agencies. National ADAPT and the National Council on Independent Living supply affidavits of likely harm in support of the Home Care Association’s lawsuit.

The Department of Labor appeals this decision along with a second decision striking down companionship rules.

Feb. 27, 2015: The American Association of People with Disabilities files an amicus brief in support of the DOL’s appeal. This puts AAPD at odds with ADAPT and NCIL.

Apr. 6, 2015: ADAPT and NCIL submit their own amicus brief in support of the Home Care Association.

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How the Mess Began

In September 2013, in conjunction with the Department of Justice and Centers for Medicare and Medicaid Services, the Department of Labor announced all home care workers must receive at least minimum wage and overtime starting in 2015. The Home Care Association of America sued to keep the rule from being implemented, and ADAPT and the National Council on Independent Living submitted affidavits supporting the Home Care Association. In December 2014, a federal court ruled for the Home Care Association. The DOL appealed, and at press time there had not yet been a final ruling.

Then, on Feb. 27, AAPD filed an amicus brief without the knowledge of many of its board members, asserting attendants ought to be paid overtime — the main point of contention. The document was written by Sam Bagenstos, a longtime supporter of disability rights and professor of law at the University of Michigan. Previously he was the principal deputy assistant attorney general at the DOJ, and his career as a civil rights lawyer has focused on disability rights.

The brief’s major point is that low wages and turnover are the most significant barriers for people with disabilities seeking access to personal assistance services. Since the Home Care Rule addresses this by saying workers must receive minimum wage and overtime, the brief argues the Rule is a good thing that will bolster and support attendant care workers, without whom the whole our-homes-not-nursing-home house of cards falls. Therefore, states must implement the Home Care Rule in a way that promotes the required integration of the Americans with Disabilities Act.

So what part of this does ADAPT disagree with?

“The conclusion,” says Bruce Darling, a national ADAPT organizer and executive director of the Center for Disability Rights, located in Rochester, N.Y. That conclusion is one line long: “The judgment of the district court should be reversed,” which would mean the implementation of the Home Care Rule would go forward. “We don’t disagree that increasing wages makes things better. We see the relationship between people who use attendant care and attendants as being symbiotic,” he says. But ADAPT believes providing overtime pay to attendants will cause more harm than good.

Fellow ADAPT organizer Cathy Cranston, from Austin, Texas, echoes Darling’s sentiments about the relationship between consumer and the attendant. She has worked as a personal assistant and her husband has a disability, so she says she sees both sides. “We are extensions of consumers,” she says. “Some attendants want to fix or save the person or make their life better, but that’s not the job. We’re there for the person we’re serving, that’s our purpose. It’s a sacred relationship.”

Darling shares how his friend and fellow ADAPT activist, Debby, is afraid her attendant, Keisha, will not be allowed to work the overtime hours that keep her finances afloat if her agency is forced to pay time and a half. Keisha, in turn, worries Debby’s hours might be cut on her behalf, and then Debby wouldn’t be able to keep her independence. “And this is who we are fundamentally as a community,” says Darling. “The first thing the consumer thinks about is the attendant, and vice-versa. I share this because I think some of the difficulty we’ve had is that people are applying the worker-manager model to what we’re saying, and that’s not what we’re doing at all. We are acknowledging that when you move one piece without the other, bad things happen.”

But if CMS approves higher rates to allow overtime pay, surely the states will come through and fund their share, won’t they? New York did, when overtime went into effect, right before the injunction. “But that was $5 million for six months, and that’s enough money to maybe get our state through three months. When the new budget came out, there was no provision from the state to pay for overtime,” says Darling.

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Chicago: Unions Can Help

In Chicago, the disability community decided to embrace the unions. Why? Because they were failing at getting their aides raises.

“When I first came to Illinois, the rate was so low I couldn’t hire sustainable personal assistants,” says Rahnee Patrick, director of independent living at Access Living. She’s also a Chicago ADAPT organizer and uses personal assistants. “Chicago ADAPT took up getting raises one year, as did the workers union SEIU. We couldn’t get it through, but once SEIU became the collective bargainer, we’ve seen an increase and I’ve been able to keep my assistants for longer stretches. I get better services because I get a consistent, sustainable base.”

Personal assistants can start at $13 an hour in Chicago, and for a little while anyway, overtime pay was not a problem. Overtime was instituted by Illinois in preparation for the Home Care Rule, which was to take effect Jan. 1, 2015. “But then the rules were vacated and National ADAPT supported them being vacated,” says Patrick.

Patrick is angry at National ADAPT for not doing more to support workers and for demonstrating against SEIU, the union many of Chicago’s personal assistants belong to. “We boycotted a national action over this. With SEIU here in Illinois, we obviously were able to get overtime for our personal assistants, and they are pissed the overtime rule has been vacated.” Without a rule saying it must, not even progressive Illinois will fund overtime pay.