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  • Writer's pictureMichael Astor

Punishing Success

Updated: Nov 21, 2019

A father pushes his wheelchair-bound son past people protesting disability service cuts outside Gov. Andrew Cuomo's New York City office

It's becoming increasingly clear that Gov. Andrew Cuomo is carrying out a covert war on the disabled, with recent cuts or threatened cuts to several highly successful programs. First, the governor cut the popular CDPA program that allowed disabled people and the elderly to hire their own caregivers, including family members, hurting tens of thousands of people and likely forcing many of them into institutions.

This was not especially surprising after we learned that Cuomo received a million dollar campaign contribution from hospitals and nursing home associations, but it was extremely short-sighted, since it costs more to keep people in institutions than have them living at home. (There is a morbid addendum to this calculation, however, since people's life expectancies diminish drastically when they are institutionalized, effectively realizing a savings by killing them off.)

Now, it seems the Cuomo administration is coming after Self-Direction, a Medicaid Waiver service, that allows disabled people to receive a fixed amount of money and some control over of how it is spent on staffing, housing, transport, classes etc. Like running a small business, Self Direction is extremely complicated and bureaucratic but it can be made to work much better than the traditional agencies, who can sometimes make their money regardless of whether the client is truly being served or not.

The commissioner of the Office for People With Developmental Disabilities, Dr. Ted Kastner, recently called attention to the growing numbers of dollars directed toward Self-Direction and cited the ballooning costs as a concern. What he neglected to mention is that the program is growing because it has been so successful. It's also cheaper, because it cuts out a lot of intermediaries and gets the money to the people who need it most. Unfortunately, Self-Direction users and parents don't have associations to lobby for them, while the traditional agencies do. So none of this entirely surprising, just somewhat immoral.

Kastner also suggested that the state didn't really know what people were doing with the money and he attacked one category in specifically, Community Habilitation, which seeks to get the disabled person out into the community. He said the Community Habilitation hours were out of control and that aides were using these hours to get paid while they sleep. None of this is strictly true. Every single expense has to be justified in a line item that has to be sent back to Albany for approval before it can be implemented, often too late to pay for time sensitive expenses, like classes with fixed enrollment dates.

And while it may be true that more and more people are using Community Habilitation hours that's because people are using Self-Direction for what it was designed to do -- enabling disabled people to live meaningful lives among their peers. Nobody I know has enough Community Habilitation hours to cover round-the-clock care, so forget about using them to have someone work an overnight. The use of half truths and truthy sounding phrases suggests, to me, that these are well-crafted talking points intended to spin the debate and justify cuts that will cause real harm to tens of thousands of disabled people and their families. Even the specter of cuts adds to the generalized stress that still afflicts the disability community, who daily struggle to make a balky system work.

In another obvious talking point, Kastner suggested that Self-Direction was being applied unequally. Now, I've heard Self-Direction described by someone as "Medicaid services for the rich and famous," because the people who use it tend to be the kind of well-informed people who can afford to make a full-time job out of caring for a loved one and those people, in today's United States, tend to be white and middle class. But that's not a reason to scrap or attack the program. Instead, officials should be working to bring the program to poor and minority families -- and generally making it easier for everyone to use -- rather than trying to pit people against each other so they can take benefits away from people in need.

The latest attack on New York's disabled came on Tuesday Nov. 12, when officials announced that an extremely successful e-hail program for people with disabilities would be severely curtailed, to the point of making it almost useless. That move wasn't entirely free from spin either since they simultaneously announced that they would double the number of people served, so they could claim they were expanding it when actually they were trashing it.

Basically, the e-hail program allows Access-a-Ride users to hail accessible taxis and car services through an App, instead of having to reserve an Access-a-Ride van two days in advance and then hope it comes on time or even at all. Of course, the e-hail program was hugely popular, it works so much better than Access-a-Ride and it costs far less per ride. I can't, however, say what the total cost difference is, since a lot of people just don't use Access-a-Ride unless they desperately need to, because it's such a balky, humiliating, experience. Again I wouldn't be surprised if the companies subcontracted under Access-a-Ride don't have a few lobbyists of their own.

In other words, the Cuomo administration's covert war on the disabled is all about punishing success. And this why we have to change the model by which services are delivered so that the disabled get everything that they are entitled to -- in order live as functioning, vital members of society -- in a timely and dignified manner. The government should be judged by the level of service it provides and not on how much the services cost. Of course, the government should seek efficiencies but if they fail to provide a high level of service, the burden should fall on the government and not on the disabled. Currently, if you have to wait five years to get approved for Medicaid or lose days of work because your loved ones support staff is MIA, it's your problem not the government's. We need to turn that around. That's what we mean when we talk about an "Abilities Revolution."

We also have to fight the idea that the disabled are getting something for free or that they don't deserve. No one choses to be disabled and yet the disabled are the only minority whose civil rights are almost entirely conditioned upon cost. This is frankly disgusting. These calculations also fail to consider the human cost in terms of stress, lost work time, destroyed families and lives. When a court recently declared Cuomo's CDPA cuts illegal, no effort was made to compensate the families for all the added stress and considerable paper work needed to re-certify home health aides. In many cases, these changes meant that people already living and working with a disabled person were unable to get paid because the process of recertification is long and drawn out.

Nor is anyone looking at the stress and confusion resulting from the government's poorly handled shift to a managed care model which in the name of cutting excess, will only encourage insurers to enforce savings in the only way they know how -- by denying benefits as much and for as long as possible. This is especially true because in traditional insurance pools you have healthy people paying premiums who offset the costs of caring for the sick. With the disabled population you don't have any non-disabled, who don't need services, to offset the cost of care. Which is to say, the model makes no sense.

The funny thing is that it's usually cheaper to provide high quality services that disabled people actually need and can use. Then there's another added benefit: The more abled the disabled become through supports and accommodations the more they participate in the local economy, stimulating it. Lately, I've been hearing a lot billionaires saying that being made to pay their share of taxes is "punishing success.” I disagree. I'd say that being able to pay to support a better, more just society is just one of success' rewards. Meanwhile, Kastner and the governor say there's just no money available to support the few successful programs that are actually helping disabled people. So let's not punish success, let's have an Abilities Revolution instead.

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