The post-9-11 news from our state government has been full of stories about cutting costs and holding spending increases down, but the reality is that our leaders have no interest at all in saving money. They want to look like they are acting responsibly to keep the budget in check, but it's all appearance and no substance. Our officials are fond of telling us that there must be "personal responsibility" for our actions, but they do not apply this concept to themselves.
Why this accusation?
Overwhelming evidence proves that segregated programs for people with disabilities (including all institutions and sheltered workshops) are far more expensive than their equally safe and more effective integrated community-based alternatives, yet funding streams and policies continue to support and actually encourage segregation, as well as programs that keep people on benefits rather than providing incentives for them to work.
For years we pushed for a Medicaid Buy-In. Advocates presented irrefutable evidence that over time it would save money and actually bring in revenues by putting people to work. Yet it took a massive and concerted advocacy effort to force its adoption (the key word here being "force").
How many times over the last eight years have you heard about the need to get people back to work? Yet recently the state Comptroller (who is running for Governor) and the Governor's Division of the Budget forced VESID to put out a contract application for supported employment services that originally offered an inadequate one-shot maximum of between $4,900 and $8,400 per person (depending on the disability) to assist people with disabilities to get jobs, while segregated alternatives for the same people cost from 20% to 200% more, every year of their lives, with no productive end result. Advocates had to fight to stop this.
Now let me bring this down to the local level. Did you know that the actual cost of keeping someone at Broome Developmental Center is approximately $861,000 per year? No, that's not a typo. My guess is the cost is so high because so few people live there anymore but they still have to cover all the infrastructure costs. Yet they make one excuse after another for why they can't afford to integrate people into the community, or provide consumers with assistive technology or home modifications. The entire budget for technology and home modifications for the six counties served by the Broome DDSO is $30,000. The average total cost, for all services, of supporting a person in the community using Medicaid Home and Community-Based Services waivers is only $64,744 a year (see "NYS Disability Service Costs Revised").
For the last two years, advocates have been asking for a new Medicaid waiver for people with physical disabilities, similar to those in Kansas and other states, which would assist people to leave nursing homes and other institutions, and provide adequate supports for them in the community. Our officials claim they need time to study the situation, gather and evaluate data, and other such bureaucratic doublespeak. They ignore two simple but extremely pertinent facts: By law, waiver costs cannot exceed those of institutional care. And, in the overwhelming majority of cases, waivers cost less than keeping people imprisoned in segregated environments. They need only look to New York's very successful traumatic brain injury waiver for proof. So, I ask you, what is there to study? We already have all the information we need to move ahead.
We need a comprehensive statewide plan that incorporates policies and funding streams to reverse this grossly expensive institutional bias in favor of more cost-effective, efficient and humane integrated alternatives. We don't need more money in our budget, we just need to reallocate our resources in a responsible manner. There is more than enough money to go around. All we are missing is the will and desire to make the necessary changes.
The evidence presented here seems clear. Maintaining the status quo, or in some cases moving backward in time to more oppressive and discriminatory policies and practices, will not save money. It will, in fact, cost more. So what is behind these apparently irrational policies? Consider the following possibilities and decide for yourselves:
Could it be malice and vindictiveness? Harsh and biting words I know, but how else can we explain policies and laws that actually favor segregation, the more expensive choice, over integration, the less expensive and more empowering option? When we have demonstrated repeatedly that our proposals would actually save tens of millions of dollars and we are ignored and dismissed, what are we supposed to think? Those of us who have experienced discrimination, imprisonment in institutions and a myriad of barriers thrown in our paths when we want to live inclusive lives in our communities, can only think that someone is trying to hold us back, possibly to retaliate against us for our rising activism and persistent demands.
Could it be self interest? Certainly many of our officials get big campaign donations from people whose interests are best served by maintaining a policy of segregation. For example, one of Governor Pataki's regular campaign donors was the person who owns the Northeast Center for Special Care, an institution cited for numerous instances of malfeasance, abuse, and violating patients' rights. Yet they are still in business. Then there are the adult home industry lobbyists who were appointed to high positions in the Department of Health, where they looked the other way while hundreds of people with disabilities were neglected and abused, and died, in huge human warehouses in New York City, and the state's nursing home monitoring system fell apart.
Or is it simply incompetence? At STIC, we regularly examine our finances and create long-range plans for fund and program development to grow our agency and meet the needs of consumers in a fiscally sound manner. We consider the entire budget and the effects of each program or funding source on the whole, when allocating funds. To do otherwise would be irresponsible and our auditors would raise a red flag. Yet year after year, our officials keep proposing to cut this or that disability service line item while ignoring the fact that such cuts will force increased spending elsewhere that will exceed the amounts "saved". They resist following a long-range strategy that makes small investments now to reap great savings later. Cuts are highly visible and popular with some people, while the increased costs they create down the road aren't so easy to see. Politicians and other officials only care about how they can make things look today, two months before another election.
We, the citizens who pay their salaries and fund these programs, are the ones who suffer because of their bad decisions, incompetence or lack of interest in seeing things change. It's time to coin a new phrase, "Government Responsibility". See you at the polls this November.
