Aging & Disabled Americans: The Battle for Healthcare Funds

Disability Advocates, Nursing Home Industry Battle for Health Care Dollars for Aging, Disabled

In 2010, Washington State's then-governor Christine Gregoire made a decision that could potentially affect the self-determination of thousands of people in her state: she ordered the slashing of social service budgets by 10 percent across the board. Disability justice groups around the country quickly mobilized against the cuts. For many disabled people, the loss in funding meant the difference between keeping their home care assistants or being sentenced to nursing homes and effectively losing their independence.

Federal law says states must fund facilities like nursing homes, but whether they fund at-home care is left up to state governments. "While my heart is there, my pocketbook is empty," Governor Gregoire explained. As she would have had it, the forced ghettoization of thousands of disabled people was a sad but inevitable result of the recession.

Washingtonians with disabilities like Aditya Ganapathiraju were anxious. Prior to his spinal cord injury in 2002, he says, "I had a fairly typical life. I was really independent and whatnot." A motorcycle accident left the 18-year-old college student with mobility impairments. Unfortunately, "both my parents were deceased. I didn't have family that I could really go back to, and as a result, I had to go to the nursing homes."

Ganapathiraju's adjustment from able-bodied campus life to a highly regimented nursing home was rough. Like many facilities, his was run in a "one-size-fits-all" manner, even though people there had all sorts of disabilities. It was also isolated, far out in the suburbs of Snohomish County. "I couldn't just go down the street and go to the library or something. And so I really just craved interaction with someone." Even going to the hospital and chit-chatting with the doctors and nurses there became a treat. "More or less, when you're in a home [there aren't] people with whom you [can] converse with. It wasn't a great place for a 20-year-old, who was formerly fairly social, to find themselves in." The patient-to-doctor-and-nurse ratio was high, and most caretakers didn't have the specialized training to work with someone with a spinal injury. That made basic, daily functioning difficult.

Not long after entering the facility, Ganapathiraju wanted out and sought to live in the outside community with an assistant. But leaving proved difficult. "There's this institutional inertia where workers would kind of give you the pessimistic side of moving out into the community," he explains. His caseworker did little to facilitate the process ("It could have just been the thought of extra work that prevented him from being helpful," he speculates), but his persistence worked: he managed to find a family that invited him to come live with them, and he was paired with a more competent caseworker in neighboring King County. The new caseworker got the state to transfer funds that were going to the group home to a personal caretaker who could learn the specific needs of someone with a spinal injury. "It was liberating," he recalls. "It facilitated me re-entering school, because I couldn't have done that from a group home." Things were looking good, until Gregoire announced her cuts amidst the 2010 December holidays.

Around that time, disability justice activists, including Carl Peterson of the Autistic Self-Advocacy Network (ASAN), had what Peterson describes as a "really, really disconcerting call" with Gregoire's people. "They basically said, 'This is her budget, she's not going to make any changes to it.' It was horrible," he remembers. "It was her budget, and she felt very entitled that she had that power." The district attorney's office made the situation worse, according to Ganapathiraju, by trying "to convince the governor that if you back down on this issue, you'll never be able to make any cuts on any of your programs ever again. Which is not true, but that's the kind of message the governor was getting," he says.

And there's more trouble with Gregoire's "budget shortfall" argument: at-home "community care" is actually considerably cheaper than nursing homes and similar facilities. But the assisted-living industry is sinking billions into public relations and lobbying to make sure that state money is directed into their own wallets. Between 2011-2012, one company, Kindred Healthcare, spent over $3 million on lobbying, and donated more than $2 million to both Democrat and Republican party coffers. The lobbying seems to be working out for them: the $116 billion nursing-home industry gets between 60 and 70 percent of its funding from state governments, mostly through Medicaid.

According to an industry magazine that ranks nursing home companies by number of beds, in 2012, the top ten were proprietors of over 235,000 beds. Beds that are a money suck if they're empty but a potential goldmine when filled, particularly for the executives on top. Directors regularly make seven or eight figures off of facilities where a private room costs an average of about $87,000 per year. Compare that to the average wages of health aides, who make around $20,000 per year. Add to that home payments or rent, and even if those aides made a more livable wage, the cost difference is in the tens of thousands of dollars.

Pennsylvanian Jeff Petty got into the business 20 years ago. "I was just looking for a job," he explains frankly. "A lot of people in our industry have a passion; you know, 'I took care of grandma growing up; that left a searing kind of memory for me, so I went into the field.' That wasn't me. I was in big, corporate America, looking for an opportunity. I found one, and it happened to be in this business." Today, Petty heads up Wesley Enhanced Living, operating five facilities across Pennsylvania, which he calls "the Silicon Valley" of care facilities.

Petty, whose business caters mostly to seniors, believes the socialization offered by his "continuing care retirement communities" (CCRCs) helps combat depression. And even Ganapathiraju, who now sits on the Governor's Committee on Disability Issues and Employment, admits that often nursing homes are "Sometimes the only option, or the best option, especially for folks, say, with special needs, that need an extra kind of guide throughout the day." Still, the majority of disabled people (and seniors) would rather live outside of such facilities - even a place like Wesley, with its game rooms outfitted with Nintendo Wii systems, shuttles to the mall and concierge services. In fact, when asked whether or not he sees himself ever living in a CCRC, Petty laughs: "That's a great question. Everybody in the field, when they're my age, go, 'No.' As does everybody else. I have no idea, to be honest with you." So it shouldn't come as a surprise that in 2011, there were 511,000 people in the United States on waiting lists for waivers for home care services. Likewise, an AARP study from 2012 found that 64 percent of Medicaid long-term service dollars for older people and adults with physical disabilities went to nursing facilities, the study's authors noted, "even though most people prefer to live at home." (Meanwhile, the most recent Congressional report on the subject found that 9 out of 10 nursing homes were understaffed over a two-year period from 1999-2001.)

Jennifer McPhail, an organizer with the disability rights group ADAPT, believes that "there's an institutional bias within the system" against home care. "We've been trying to change the funding streams and policy decisions that lawmakers put in place," a process that requires negotiations and sometimes public protest or embarrassment of those lawmakers. In 1991, McPhail was one of 40 disabled people, many in wheelchairs, who refused to leave Texas' then-governor Ann Richards' office. Two days later, Richards agreed to move toward offering community-based care.

A senior legal counselor at the Department of Justice's (DOJ) Civil Rights Division, Eve Hill, is more optimistic: "Traditionally, states have made people with disabilities go into institutions like psychiatric hospitals or developmental disability centers or nursing homes to get their health care and other services, and over time we've come to realize that we don't have to gather all of the people with disabilities together" into these institutions. The segregation, she notes, "has led to sometimes problematic conditions for people when they're set aside, in a way, from the rest of the community" - conditions that include the depression Petty claims his facilities decrease. Some states, such as Nevada and North Carolina, "have been able to re-balance their programs, provide the services at often the same or lesser cost, and it works in every aspect." But other states are hedging on the issue. A Kaiser Family Foundation report released in December 2012 found that in 2009, Texas alone had nearly 100,000 people on its waiting list, more than double the number of people in its community care program.

On paper, the Americans with Disabilities Act (ADA) provides that disabled people are entitled to the "most integrated" setting and the Supreme Court's 1999 decision in Olmstead v. L.C. (known in disabled activist circles as disability's Brown v. Board of Education) found that people with mental disabilities should be allowed to live in the community, not institutions, on the condition that states have the resources to provide community care. In 2011, Governor Gregoire's cuts led to another case that was based around Olmstead, a case called M.R. v. Dreyfus. In Dreyfus, 12 disabled plaintiffs successfully argued that Washington's budget cuts would mean they wouldn't be able to get the hours with a care assistant they needed for basics like bathing, eating and going to the doctor. Their health would deteriorate, and they'd inevitably be sent to nursing homes. 

The plaintiffs won, but the fight wasn't over. Gregoire filed to extend the deadline for appealing the decision. Disability justice activists went into overdrive, calling in organizers from as far away as DC, New York and Texas.

In the case of Washington State, the pushback worked. After several protests, press conferences and petitions, Gregoire re-checked her pocketbook. In October 2012, Gregoire released an official statement: she would not challenge M.R. v. Dreyfus. It was a big win for disability rights advocates. ASAN's Peterson believes the national organizing made a "huge" difference. Without it, "honestly, we wouldn't have been able to pull this off," he says. "If we didn't organize, if that protest didn't happen" at the state capitol, "if those op-eds didn't get written, and what have you, I think she probably would have sent [the original budget] out."

In some states, nursing homes are already in decline. Minnesota, Tennessee and West Virginia decommissioned hundreds of beds between 2006 and 2010, while many others stayed static after a boom in assisted living facilities in the late 1990s. ADAPT and others are pushing for their Community Choice Act, which would make it easier to divert Medicaid funding from nursing homes to at-home care. The White House, the American Medical Association, and many in Congress are on board, though the Act was left out of the last round of federal health care reform. Taking notice, some nursing home conglomerates are expanding into home care. The second largest in the industry, Golden Living, got into the business in 2004 through its AseraCare offshoot. "When you go in the hospital, the first thing you do is, you get a wristband slapped on you, or a name on a door, and that means you're a patient. You've lost the ability to be a person," explains AseraCare's President Angie Hollis-Sells. "In home care, you can maintain personhood. And we want to be people, we don't want to be a wristband." Her company, which is being sued by DOJ after former employees alleged that it was defrauding Medicare out of millions of dollars, is paying close attention to the question of government funding. "Where is the dollar for health care gonna go? Is it going to reside with the patient? Is it going to reside with the payer? Is it going to reside with the physician, or with the hospital?" Hollis-Sells says the question is not going to go away.

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Childhood Happiness leads to Adult Wellness

DNA Doesn't Lie: Happy Children become Healthy Adults

It sounds like science fiction but it is a scientific fact. A happy childhood leads to a healthy adult life. This is what scientists found when they examined the effects of childhood adversities to DNA. They found that the tiny protective caps of our chromosomes, which are called telomeres, shorten prematurely when kids consistently experience traumatic events. Scientists have found that long telomeres are associated with health and vitality, while short ones are usually found in seniors or chronically sick people. Telomeres somehow record the accumulative impact of different lifestyle factors in our health. Although the way they do that is not clear yet, one thing is certain: they are sensitive to oxidative stress. It is well known that psychological pressure exposes our cells in debilitating free radicals. This could be a reason why telomeres become prematurely short. Research shows that adults who had difficult childhood years have consistently shorter telomeres and are at higher risk of chronic and debilitating disease.

If this sounds too exaggerated, think again. Doctors from the University of California have found that even when the expectant mother is experiencing consistent stress, the maternal hormonal and physiological responses are perceived and recorded by the fetal DNA. The research found that when women went through an intensely negative experience during pregnancy, their adult offspring had shorter telomeres, in comparison with individuals whose mother had a calm pregnancy. It looks like in some cases, adult disease is programmed in the fetal DNA. Psychiatric research now indicates that childhood maltreatment affects brain structure and in fact, the more serious the level of abuse, the more obvious neurobiological abnormalities are detected, especially in susceptible subjects.

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Troubling Links between School Suspensions & Ethnicity of Students Examined

Punishing Students For Who They Are, Not What They Do

Until last month, I had never seen a stop-and-frisk happen. Despite the amount of attention devoted to the controversial New York City policy in the last year, despite the protests, and despite having lived in the city for almost four years, I had never witnessed a stop-and-frisk. And then, a few weeks ago, I watched as two policemen stopped middle-aged black man on 98th Street, and frisked him. I wondered, not for the first time, what it would take for those same policemen to stop and frisk me. Controlling for all other factors—location, time of day, behavior—what would it take for the cops to stop and frisk a pretty white lady on the Upper West Side?

Somewhere in America, there’s a politically aware white high school student asking himself the same question, not about stop-and-frisk, but about school suspension. How much would I have to misbehave to run the same risk of suspension as my black classmates?

If you’re a white middle or high school student, and you don’t have a disability, your odds of being suspended from school are one in fourteen. If you’re a black middle or high school student without a disability, your odds are one in four. According to a new study by the Civil Rights Project at UCLA, a quarter of black students were suspended in the 2009-2010 school year. A quarter. For students with disabilities, the odds are one in five. And for black girls, the numbers are a stark demonstration of what happens when two forms of discrimination intersect: Black girls are more likely to be suspended than black boys or white girls. And, to the surprise of absolutely no one, when you add a third axis—disability—the figures get even worse. Black girls with disabilities are suspended at a rate sixteen percent higher than white girls with disabilities.

Schools, under-funded and over-populated, are suspending students for minor infractions like cell phone use or loitering (or for violating dress codes, which are problematic for a host of reasons), and being suspended dramatically increases your chance of dropping out altogether. One Florida study found that a single suspension in ninth grade doubled dropout rates, from sixteen percent to thirty-two percent. And though suspension rates are unnecessarily high, they’re disproportionately high for those students who are already marginalized.

There are ways to bring down the number of suspensions across the board, as the study notes. Changes to codes of conduct, implementing positive behavioral supports, better training and supporting teachers, and implementing principles of restorative justice, are all ways to reduce the number of suspensions. But that reduction in raw numbers will not be enough unless schools also address the disproportionate punishment of minority students.

Punishment rates in schools mirror the rates in the “real world” – though what could be more real than entrenched discrimination in our schools? – and in fact, contribute to those real world figures. The Civil Rights Project report notes that the abuse and misuse of suspensions can turn them into “gateways to prison.” Even if that were not the case, even absent a school-to-prison pipeline, the situation would be grim enough. What this report reveals is a disregard for the well-being of marginalized populations that, were it directed at other groups, would never be allowed to stand. If a quarter of white middle school boys were being suspended every school year, and if pretty white ladies were being frisked on the streets of Manhattan, there’d be uproar.

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Home Gardens are Healthy - and Easy!

Are you thinking about home-gardening?   

More and more people in our community and others around the world are thinking about it and acting on those thoughts.   There are certainly many positives to growing your own vegetables at home.

For example, we found this simple yet encouraging list:

1-A veggie/fruit garden reduces the carbon foot printand global warming.
2-A home garden reduces the consumption and therefore production of chemical fertilizers as less demand will be followed by less supply.it increases the chemically free produce though!
3-Your own garden improves on the healthy diet of all the family as it introduces home grown organic food harvested right from the backyard.
4-It saves on the grocery bill -and medical bill as heath improves - and  grocery shopping drops.
5-Vegetable gardens have a definite beautification impact on the neighborhood ... as more gardens are planted.they beautify your city!
6-Quality family time increases as more members come along working the garden .communication and socialization effect pays in better family interaction.
7-Community gardens as well as home gardens foster bonds beyond the fences.they promote dialogue,cultural diversity,tolerance and provide healthy greens to families of lesser income and means!
8-Get the local youth at schools and home engaged in productive social projects with less time spent on tv,internet games etc.provide opportunities to learn about recycling, leadership, diversity, sustainability etc
9-Provide an educational ground to learn about outdoor activities that are productive like gardening skills,composting,
10-Support thr echo-system, create biodiversity and be a pro-active member in the new paradigm  of permaculture, sustainability and green ecology     - localharvest.org

They're also pretty easy to start, too!  Take for example this interesting article showing how simple it is to create your own seedlings with a few simple and inexpensive "pieces."

So, c'mon Dade County!   Start your vegetable garden this week.  Please email us updates and photos and maybe your home garden will appear in this blog.