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WPCNR MAIN STREET JOURNAL. April 25, 2006. From Ric Swierat, Westchester ARC. :On April 21st, in Tarrytown, NYS Attorney General and candidate for governor, Eliot Spitzer, addressed over 200 attendees at the annual Westchester Arc Employers’ Breakfast. This is an event that shows appreciation and recognition to those local businesses that provide real opportunities for employment of people with developmental disabilities. I thought you would enjoy reading Mr. Sptizer’s remarks.
It is often said that New York is a family. Those with disabilities are members of this family and it is our obligation as a State to offer them the same opportunity, independence and empowerment that we aspire to for all members of our family.
Today, I want to address the developmental disability community, the transition they face and how government can make the inputs necessary to ensure we continue to move towards a culture of inclusion, independence and empowerment. Today, rates of autism and other developmental disabilities are at an all time high. The legal landscape continues to evolve and a growing “self-advocate” movement has emerged to challenge all of us to take a fresh look at the way we approach these issues and even the way we talk about them.
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Westchester Arc and other organizations throughout the State are showing all of us how to adapt to this changing landscape. Last year, when Westchester Arc changed its name, it symbolized this necessary shift in thinking. But more than changing the vocabulary, you have changed the way we should care for and support people with disabilities – emphasizing integrated employment over sheltered workshops, community-based homes over institutional facilities, life planning over ad hoc case management.
Just as Westchester Arc has adapted to changing times, so too should the State. New York has come a long way since the days of Willowbrook, but times are changing and the State’s support system needs to catch up once again. From core government services like education, workforce development, housing and health care to nontraditional services like caregiver support and life planning, State government must continue to think creatively about the way we approach these issues.
I first want to make clear what our starting point must be. Justin Dart, the father of the disabled rights movement, put it best. He called on all of us to lead a “revolution of empowerment.” As we rethink our public policy, we must start from this premise. We must start with the idea of putting people at the center of the support system, of empowering them and their caregivers with the supports necessary to live fulfilling, normal and productive lives.
And we must do this not because it’s politically the right thing to do or because it may garner more votes from one constituency or another. We must lead a “revolution of empowerment” because, in the end, the choice we face isn’t about politics. It’s about who we are as human beings. It’s about our core belief in the moral obligation of government. And it’s about what kind of community we want to live in. Is it one where we look after each other like a family? Or is it one where each of us is left to fend for ourselves? I know that if we work together – bound by a shared vision and determination – we can give meaning to Justin Dart’s inspiring words.
Early Intervention and Support for Special Education
Take education, which is perhaps the single best way to empower people. This is especially important for those with developmental disabilities. But we currently face a number of challenges. First, we must do a better job of identifying those children and families in need of developmental and educational services. I often say preventive care is one of the pillars of lowering health care costs in New York. I think early intervention in the education system works the same way. We have a window of opportunity to establish a life of independence and we need to seize it so these children can live fulfilling and productive lives, independent to the extent possible of costly government services.
The State’s Early Intervention and Preschool Special Education Programs have done a commendable job for our infants and toddlers with developmental disabilities. We must continue to make sure that at every transition point, from early intervention to pre-school to kindergarten to middle school to high school and beyond, we maintain an appropriate level of services throughout what should be a seamless system. Unless we commit to appropriate early intervention and education services, we will have missed an opportunity to enhance lives and futures. Having said that, we also must recognize that these services are costly and in great demand. We must continually evaluate the efficacy of these programs and make sure their delivery is coordinated and accountable to avoid waste and abuse. We also must make sure these services go to those infants, toddlers and children who need it most.
The second challenge is providing the right support. Intervention is not enough. Even if we identify every child who has a developmental disability, we still must provide the right supports to ensure those children receive the education they need to live independent lives. Currently, New York has a shortage of special education teachers, speech and language therapists and other support personnel. In addition to an emphasis on math and science teachers, we should launch an aggressive effort through scholarship programs and other incentive programs to encourage a new generation of special education teachers and therapists. Incentives should be tied directly to service in our public schools so teachers and therapists are not only encouraged to get into the field, but into schools where children of all income levels can have access to their support.
In bolstering our education supports, we must also confront the growing autism rate in this country. The National Institute for Mental Health estimates that 1 in 334 children is diagnosed with autism today versus 1 in 10,000 just 20 years ago. Many cases of autism require intensive one-on-one instruction, which can be prohibitively expensive. We must look for ways to make this kind of education affordable and attainable for those New Yorkers who can’t afford private instruction.
We also must address the hostile environment that confronts children with disabilities in many of our schools. It’s hard enough to be bullied as a young kid, but when you speak differently, look differently or act differently than the rest of the kids, it’s even harder. We should make sure our public schools raise awareness and understanding of people living with disabilities – that when they teach about the Civil Rights Movement, they make sure to include the historic struggle of the disabled, how far they’ve come and how much more we need to do.
Jobs and Workforce Development
Transitioning from the education system into the real world also must be addressed. Once people with developmental disabilities leave the education system, they face many daunting challenges such as finding a job. Currently, about two-thirds of the disabled population are unemployed – a figure that actually worsened during the economic boom of the 1990s. This is unacceptable and the next governor must make it a priority to reduce this number.
If people can’t be convinced by the moral imperative, surely they can understand the economic imperative. Franklin Roosevelt put it this way: “No country, no matter how rich, can afford to waste its human resources.” And yet here in New York and around the country, that’s just what we’re doing. The pool of people with disabilities is a large untapped resource for employers and we need to provide the skills, supports and connections for that resource to be tapped.
The benefits to companies who employ qualified disabled workers are well-documented and the hundreds of employers in this room are testaments to that fact. Plus, jobs mean freedom for people living with disabilities – freedom not just from the isolation of a sheltered life, but freedom from costly government services.
The State should call on local One-Stop Career Centers to develop a database of people with disabilities seeking employment and employers seeking to hire. Too often I hear that employers who want to hire people with disabilities have trouble because there is no single location where they can find qualified candidates. Similarly, qualified people with disabilities who want to get a job have trouble because there is no single location where they can find interested employers. The State must help close this gap.
We should also use our local Workforce Investment Boards, which include representatives from business, labor and academia to identify the issues or concerns, real or perceived, which prevent companies from hiring qualified people with disabilities. This information should inform our workforce development system so we can provide the right kinds of skills and supports necessary for employability.
Another way the State can encourage employment of the disabled is through its procurement process. In 2004, the State entered into 41,000 contracts worth $28 billion. As a purchaser of so many goods and services, we must protect and enforce important procurement practices like the New York State Preferred Source Program so organizations like the New York State Industries for the Disabled can continue to connect the working disabled population to government contracts.
Community-Based Housing
Besides employment, housing is another challenge people with developmental disabilities face. Until recently, most adults with developmental disabilities had two choices when it came to housing: live with your family or move to a large institution. Through programs like “New York State CARES”, the State has been able to offer alternative living arrangements in community-based settings that bring support services into an individual home. We should build on the success of NYS-CARES by committing to NYS-CARES II through 2014.
Given that the number of elderly disabled is increasing, we must make sure they have the option of staying in their home where quality of care is better and the financial costs are cheaper. One way to help people stay in their homes is for New York State’s mortgage agency to launch a reverse mortgage product – with the necessary consumer protection elements – to allow the elderly to tap into the equity in their homes to make the necessary retrofits to stay in their homes.
Medicaid Reform to Encourage Best Models of Care
A discussion on reforming and modernizing the State’s support infrastructure cannot be complete without addressing Medicaid. In January, I outlined a host of reform measures to make sure our Medicaid system continues to help the neediest New Yorkers without bankrupting the State.
One particular point I want to reemphasize today is that we must redesign our health care system to reward the right kind of care. Unfortunately, too often our system pays for the treatment of a disease, but not the prevention of it. Care for individuals with disabilities is no different.
We must make sure that New Yorkers are not forced to choose between taking a job and keeping their health care and other necessary supports. We should reevaluate the definition of “home care” support, which provides support to individuals with disabilities in their home, but not when they leave their home to go to work, for example. Unfortunately, a person’s disability does not disappear when they leave their home. New York’s support system should follow that person wherever he or she goes so they can have the freedom and incentive to get a job and live as independent a life as possible. Similarly, we currently offer higher reimbursement rates for agencies that house sheltered workshops than we do for a job coach and finder services that can help move individuals with disabilities into integrated job settings. We must correct these and other backwards incentives to make sure State dollars encourage behavior that reflects values of empowerment, inclusion and independence instead of isolation and dependence.
We must also ensure that the introduction of Medicare Part-D does not leave our disabled population without the services that they have come to rely on from Medicaid. I will continue to track this issue closely to make sure our disabled population does not fall through the cracks.
Life and Financial Planning
I also want to take this opportunity to touch on an issue set that does not get nearly the attention it deserves. Anyone who has cared for a person with a disability is all too familiar with the haunting question: What happens when I’m gone? Answers to this question go beyond housing solutions and employment issues. They get at another set of issues that government is only beginning to grapple with – issues like life planning, financial planning, surrogate decision making and guardianship. The State must begin to take a fresh look at how we support these services.
Westchester Arc’s Life Planning Center is a model for this kind of approach. The Center helped people like Bob Smith start his own business. Bob can’t speak, walk or care for himself on his own. He has cerebral palsy and was raised in an institution where he was locked in his room and neglected. When Bob came to Arc, the Planning Center’s staff discovered that he had been writing poetry by pointing his thumb to letters and symbols on a communication board attached to his wheelchair. Bob and his team felt that publishing his poetry could potentially lead to a form of self-employment. Bob has now written a book, launched his own business, and has gained a level of independence he never had before. This kind of model should be replicated across the State.
Life planning also includes services like financial planning. The Burton Blatt Institute at Syracuse University is launching a Center for Financial Innovation that will explore innovative ways for families to meet short- and long-term needs through asset development, training, private sector collaboration and access to venture capital so people with disabilities have an equal chance at starting their own businesses or, if they are unable to do so, at least have an opportunity to plan for their long-term care expenses. The State should track these efforts and encourage creative thinking in this area.
Caregiver Support
Finally, I cannot end this discussion without speaking to those caregivers and guardians who care for and support those living with developmental disabilities. Your lives have been forever changed. Sacrifices have been made and you should be commended for your commitment. But more than our gratitude, you deserve our support. You should not be punished because you care for your child, your sibling or your parent. You take on the responsibility the State would otherwise have to bear and we need to think more creatively as to how we support your efforts through respite care and other services. We must also call on the federal government to reform the Family Leave Act so that parents don’t have to make the choice between caring for their disabled child and having a career.
We have come a long way since “Christmas in Purgatory,” when Burton Blatt opened our eyes to the horrors of State institutionalization or what he described as “hell on earth.” And while the Willowbrooks of New York are no more – thanks in part to past governors like Hugh Carey – we must continue to make sure those living with disabilities are empowered to live independent, integrated and productive lives. Whether it’s through the stem cell initiative Senator David Paterson and I announced last week or updating our support system as I have outlined today, the we must make the disability community and these issues a priority.
Thank you.
Eliot Spitzer
