Twenty years ago, a small handful of people with disabilities and interested others had a vision:
- An organization that would promote the independence, inclusion and equality of people with disabilities in all aspects of community life
- An agency run by and for people with disabilities
- An agency that empowered others to become self-sufficient and self-reliant
- An organization that would eliminate physical, emotional and attitudinal barriers to equality, resulting in a world where disability was viewed as just another part of being human.
Thus was the foundation laid for Southern Tier Independence Center (STIC).
As one of its founders and organizers, I'm proud to be still at the helm after two decades: somewhat older, with a few gray hairs, but still embracing the ideals and the dreams that have always set STIC apart from other agencies.
STIC started with a state grant of $100,000 and 3.5 staff positions. We have grown to more than 150 employees and an annual budget of $2.5 million, spread over 20+ funding sources. Money is not the real indicator of our success, although it helps greatly in the pursuit of our goals and activities. Instead, it is the impact we've had on the systems serving people with disabilities, the changes we have coaxed in laws, regulations, policies and procedures, and the shifts in attitudes towards "disability" in general, that are our true legacy for the last twenty years.
Our philosophy does not allow us to just follow, it requires that we lead, whether that leadership be in taking unpopular views to facilitate our mission, or to demonstrate by actions the true meaning of "consumer choice" and responsibility.
Independent Living Centers were the first disability service organizations to emphasize and practice consumer control, with the state law governing our existence requiring that our board of directors be at least 51% people with disabilities. We are the antithesis of the medical model, a fact that put us in direct conflict with the majority of state agencies and other organizations. We preached that people had the right to make their own choices about their lives, to make informed decisions about their goals and services, and then to take full responsibility for the results of those choices. We spoke of "empowerment", and geared all that we said and did toward fostering self-confidence in the people we served, trusting and believing in them, and assisting them to achieve their dreams rather than judging their choices and calling them "unrealistic". It all sounds rather mundane today, but it was a radical shift in the thinking of that time, and it took many years to actually have an effect.
And it wasn't just agencies and professionals we had to convince. It was the consumers as well. They'd been told all of their lives that the doctor, social worker, counselor knew best, and they were forced to accept services they didn't want or need, in order, hopefully, to get something of what they were really seeking. We offered them a new option, a path to independence and equality. Some embraced it immediately, while others took a bit of convincing.
(Now almost all state agencies and local organizations promise "consumer choice". Sadly, however, this still usually means a limited choice of things that aren't considered "too risky"--things that won't potentially lead to a lawsuit or embarrassment for the funding source--or "choices" coerced by family members, or "choices" based on incomplete information provided by agencies seeking to promote their own services. The meaning of "choice" has been diluted elsewhere, but it is not forgotten here at STIC. We have kept the true meaning alive, and still practice it in our day-to-day activities.)
Consumer empowerment was essential if we were to achieve our larger goal of "systems change". We've achieved quite a lot of it over the years. Here are some high points:
Perhaps the first highly visible sign that we were having an impact was the tremendous outpouring of support for the Americans with Disabilities Act (ADA), the first comprehensive disability rights legislation ever to pass Congress and get signed into law.
But even before that, behind the scenes, STIC was working diligently to get local services for people who had traumatic brain injuries (TBI), a then little-understood disability that was becoming increasingly prevalent as improved emergency medical technologies increasingly saved the lives of people who were very severely injured. We educated local medical and social service providers, bringing together a task force to study the issue that eventually resulted in United Health Services (UHS) opening an outpatient rehabilitation program for people with TBI. While we recognize and applaud UHS's vision in offering this service to the community, we firmly believe that this would not have happened without STIC's leadership and guidance.
We then led the effort to bring a TBI Medicaid waiver to NY, with the goal of assisting people to leave nursing homes and other institutions and to return their homes and communities. The resulting legislation not only created the waiver, it established the TBI Regional Resource Development Centers that oversee the waiver's very successful implementation. If it sounds like we are tooting our own horn, well, that's exactly what we are doing! This legislation was almost single-handedly conceived of and fought for by STIC, and we are very proud of this accomplishment.
Our expertise in TBI-related issues, and our reputation as an agency committed to community integration and advocacy, has resulted in STIC becoming the Regional Resource Development Center for two regions, encompassing 13 counties. Since we took over these programs 15 months ago, we have more than doubled the number of people being served, and have added more staff as well. We've done this all for the same amount of money, a compliment to our fiscal and program management.
STIC was one of the key players in the effort to make Consumer Directed Personal Assistance part of state law, and to have it offered in every county in the state. STIC is now the largest personal care attendant provider in the area, proving once again that if people are offered power and control, they will eagerly take it, and handle it responsibly and effectively.
We have been a local and statewide leader in seeking closure of segregated institutions such as sheltered workshops, developmental centers, day treatment programs, nursing homes and psychiatric facilities. We have been accused of being "radical', "irresponsible" and "unrealistic" as we sought to eliminate the "institutional bias" in our disability-related laws and policies and emphasize community integration and inclusion instead. After all the resistance, things are very slowly beginning to shift a bit in our direction, although we are far from winning the battle. We have become the largest voluntary provider of service coordination in the area and we are in such demand that we can't keep up with the requests for service. Why have we become Number One? Because we are advocates, we fight alongside with and on behalf of consumers and families for their dreams of independence and integration, and we won't take "no" for an answer, even if the "no" comes from a highly placed state official. They've used audits to try to intimidate us, they've threatened to cut our funding, and they have tried to turn consumers (and sometimes our own staff) against us, but none of it has worked. We have stayed true to our philosophy and have weathered all the storms to date.
It is STIC's persistence that led to the Reasonable Accommodation Act being signed into state law, and we played a significant role in the statewide effort to see passage of Medicaid Buy-In legislation.
Most recently, as we continue our relentless pursuit of deinstitutionalization, STIC has started a Community Integration Service, assisting people who have no access to waivers or other such services to leave nursing homes and other segregated settings.
There is still so much to be done. But we have one thing that many others do not, our belief in you, the consumer; our belief in your dreams and your goals, and our belief in your ability to control your own life. Strengthened by your power and support, we are prepared to forge ahead for the next twenty years.