Note: This is the final installment of our fifty year history of The Arc. Previous installments can be viewed here. This final installment covers a very active and turbulent period; consequently this is article provides a broad overview of the activities of our chapter of The Arc, the larger disability rights landscape, and contains some information on the activities of other Arc chapters at the local, state and national levels.
The last 20 years have brought about extraordinary changes for The Arc – Jefferson, Clear Creek & Gilpin Counties and the many people with intellectual and developmental disabilities (I/DD) we serve. The most exciting and anticipated change of the decade came in the summer of 1990 when President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law. The Arc of the United States had led the development of this vital legislation, and advocates across the nation celebrated its passage. For the first time in history, people with disabilities would be protected by legislation ensuring their basic human and civil rights. Specifically, it established clear rules for employers that prohibited discrimination on the basis of disability, effectively opening the door to increased employment for countless Americans.
In addition to prohibiting discrimination, the ADA set forth parameters to make the community more physically accessible to people with disabilities. It required public transportation to accommodate people with disabilities, including those using wheelchairs or other mobility devices. The legislation went one step further to promote accessibility by requiring that all new construction be accessible to people with disabilities, and existing facilities should be retrofitted to remove accessibility barriers. This rule applied to both government-owned properties and privately-owned businesses like restaurants, hotels, grocery stores, and retail stores, to name a few. The Americans with Disabilities Act meant people with I/DD would now have access to all of the benefits of our society: to catch a bus, to go to work, to church, to a movie or out to dinner with friends.
Between this legislation and the reauthorization of the Individuals with Disabilities Education Act (IDEA) that same year, 1990 was a banner year where our federal government finally and unequivocally affirmed what The Arc’s advocates had long been saying: as Americans, people with disabilities had the undeniable right to be part of our schools and our community. In the collective mind of disability advocates across the nation, this law was the final blow to the long-held belief that people with intellectual and developmental disabilities were second-class citizens who belonged in institutions.
The possibilities seemed limitless.
Self-determination, self-advocacy and the changing face of adult supports
The 1990s ushered in a new era of self-advocacy for people with intellectual and developmental disabilities. After lifetimes of being refused the chance to speak for themselves, people with I/DD were finding their voices – thanks in large part to the concept of self-determination. In a nutshell, self-determination was the radical idea that people with disabilities have the right to make choices about their own lives, to have the same rights and responsibilities as everyone else, and to speak and advocate for themselves.
The Arc – Jefferson, Clear Creek & Gilpin Counties had long been involved with the self-advocacy movement as sponsors of and advisors to a local chapter of People First, an advocacy group comprised of and run by adult with I/DD. Now our advocates had the opportunity to extend the concept of self-determination beyond self-advocacy groups and work to promote this ideal throughout the service delivery system and the larger disability community.
From the time this Arc was formed fifty years ago, we have been working steadily to increase community inclusion for people with I/DD, methodically pushing to shift people out of institutional life and into community settings. When we started, there were no programs for children or adults in the community, and over time we gradually helped push for a robust network of government-funded programs.
Unfortunately, the systems we had spent decades building weren’t equipped to allow self-advocates a say in their own lives, and soon The Arc’s advocates found themselves pushing for changes in the very programs we had once advocated for. The people we served opened our eyes to even greater possibilities. Where we once rejoiced at the opening of a workshop for people with I/DD, we now pushed for integrated employment. Couldn’t Sarah work at the grocery store with the right supports? Where we once pushed for a network of group homes where adults with I/DD could be cared for, we found ourselves advocating for an individual’s right to take care of themselves in the home of their choice. Couldn’t Jack live on his own with the right supports? And finally, where we once sat on teams making choices about a person’s service plan, we found ourselves working to have the individual included in the discussion. Shouldn’t Rose have a say in the decisions that affect her?
It was becoming increasingly clear that one size didn’t fit all when it came to services for people with I/DD. Advocates at our chapter of The Arc steadily pushed for a continuum of services, where supports were tailored to match the individual’s needs rather than lumping people into existing programs that didn’t always make sense. Through systemic advocacy, The Arc’s advocates worked locally and at a policy level to include the principles of self-determination in all new programming, and to systematically change existing programming to consider the desires of the individual.
Although The Arc as a movement was very focused on moving people with I/DD into the community, our chapter of The Arc still had a responsibility to advocate for those individuals living in the state-run institution at Ridge. Again, The Arc believed in providing a continuum of choices for everyone, including the many individuals who had never had the chance to make a choice for themselves. Regardless of where a person lived, whether in an institution or in a home in the community, The Arc was working steadfastly to ensure each person had the opportunity to embrace self-determination to furthest extent possible. Today, The Arc continues to actively engage in advocacy on behalf of the residents of Ridge, ensuring their rights are protected and that they have a voice.
TABOR and the rise and fall of government services
At the dawn of the 1990s, advocates and disability professionals were finally seeing the fruits of decades of work to build a flourishing network of supports that allowed adults to achieve new levels of independence. High school students found work after graduation through vocational programs. Residential programs helped adults find the right living arrangement in the community. Recreational programs were expanded to include more diverse opportunities. The entire community was energized by all we had achieved.
Of course, it had taken a great deal of government funding to build this network of supports, but the economy was strong and funding for services seemed stable. Since serving people in the community was saving so much money over institutional care, it seemed like we would be able to help more and more people without increasing our share of the funding pie. Services were both more individualized and more cost-effective – everyone was thrilled.
Until the money stopped flowing. Well, at first it just slowed to a trickle.
In 1992, in the midst of a flush economy, Coloradans passed the Taxpayer Bill of Rights (TABOR), which basically restricted the amount of revenue governments could collect and spend in an attempt to prevent uncontrolled growth. At the time, with seemingly more than enough money to go around, it seemed like a great way to put more money in the hands of taxpayers. It wasn’t long before the disability community started to feel the effects of TABOR, although it would be years before the entire State felt the crunch.
By the mid-1990s, Colorado’s service system for I/DD began feeling TABOR’s negative effects. The Arc’s advocates were encouraging people to sign up for these newer, better, more individualized services, believing the innovations in service delivery would allow more people access to government-funded services. Instead, our piece of the funding pie was shrinking due to TABOR. With restricted government growth, the demand for services quickly outpaced funding. Wait lists for services were started. By the end of the decade, the waiting list had swelled to record numbers.
For people already receiving services, the new funding constraints had little impact – at first--but frustration was mounting for all of those who were waiting on the sidelines without any services. The achievement gap between people with services and people without was steadily spreading; many people in services were growing more and more independent by the day, while people waiting for services were sitting at home with nothing to do and nothing on the horizon.
As the end of the millennium approached, The Arcs prepared to take action on behalf of everyone who was waiting. In August 2000, a class action suit was filed in Federal court against the state of Colorado on behalf of three individuals with I/DD. The suit claimed the State was failing to provide residential services to more than 2,800 individuals who were otherwise qualified to receive them under Federal Medicaid law. The Arc of Colorado provided technical assistance while other local Arc units, including The Arc – Jefferson, Clear Creek & Gilpin Counties, provided financial assistance for the plaintiff families in support of the case. After several years, the federal government ultimately found in favor of the State of Colorado.
The growing waiting list was just the first of many setbacks for Coloradans with I/DD. As reported by the Bell Policy Institute, when the first recession began in 2001, Colorado’s “tax revenues fell, and the State government had only a 4 percent cushion to fall back on. Lawmakers were forced to make hundreds of millions of dollars in budget cuts.” Because of the “ratchet effect” of TABOR which limited the amount of year over year growth, once these cuts were made they would never be recouped.
If the ‘90s were the heyday, the ‘00s were a decade of painful belt-tightening in the service system. Many of these cuts drastically impacted programs we had worked so long to build. With less money to go around, the individualized programming we had promoted for years was disappearing.
Effectively, the wait list for I/DD services was created by the State’s inability to allocate new funding to serve additional people. Eleven years later, this continues to be a growing concern. In 2008, Colorado’s chapters of The Arc dedicated thousands of hours to promote Amendment 51, a ballot measure that would eliminate the wait list altogether through a slight tax increase. Sadly, the measure failed.
Not only has the State been unable to increase funding for I/DD services for all of these years, but the economic downturn has forced extensive cutbacks each year. In 2001, citing cost concerns, our local service coordination agency, The Developmental Disabilities Resource Center (DDRC), chose to move to a four-day work week. Hundreds of people receiving services were left with no programming on Fridays. As caregivers scrambled to fill this gap, The Arc’s advocates helped hundreds of families connect with community-based resources. Fortunately, we had a great deal of experience in this area, as we had spent many years providing the same support for people on the wait list.
In the next ten years, the hits would just keep coming. Just as we had seen unprecedented growth, the ratcheting back of services is equally unprecedented. The instability in government services has had a dramatic impact on The Arc’s programs. We’ve always monitored systems-change and made sure our community was informed about how this would impact them, and we continue to do this now more than ever. In addition to increase in systemic advocacy, we’ve likewise seen an increase in individualized advocacy as more and more people struggle to maintain their hard-won independence.
But what about the children?
Until the early 1980s, The Arc’s work centered largely on adults with intellectual and developmental disabilities. Sure, we had gotten our start by creating educational opportunities in the ‘60s, but with the with the original passage of the Individuals with Disabilities Education Act in 1975 and the opening of the Margaret Walters and Robert Weiland Schools, our chapter of The Arc put our limited resources toward building programming for adults.
A change in our chapter of The Arc’s leadership and staffing in 1980 eventually brought about an increased emphasis on the needs of families with school-age children. Throughout the ‘80s, our advocates worked to build a network of support that would help families both during and beyond the school day. We provided technical assistance on IDEA to families and school officials, working constantly to increase the inclusion of special education students in integrated classrooms – a movement referred to as “mainstreaming.” Again, we were advocating for a continuum of choices where, according to the law, students with disabilities would be educated in the least restrictive environment. Outside of the school day, The Arc’s advocates created a variety of programs and support groups to address the caregiving needs of families and to equip them with the necessary skills to promote their child’s independence.
These early efforts laid the foundation for many of the family supports The Arc – Jefferson, Clear Creek & Gilpin Counties offers today. In addition to individualized advocacy, our popular Mobilizing Families training series was launched in 1991 with the goal of empowering parents with the necessary skills and information to be the best advocates for their children. With everything that was changing all around us, we knew that having the right information at the right time could drastically change a child’s future.
Although children in the mid-‘90s were relatively insulated from the economic turmoil that plagued the government-funded service system for adults, The Arc’s advocates were growing increasingly concerned with the future. For students entering high school, graduation was just around the corner and it was becoming increasingly clear that trouble was afoot in the adult system.
At the same time, we were still working to educate parents and challenging them to consider levels of independence for their children that they had never thought possible. This included teaching parents the principles of self-determination in the hopes they would help their children develop decision-making skills and the ability to advocate for themselves. In addition to promoting these philosophies, there were a number of topics parents needed to learn about as their children entered adulthood. Just as with younger children, for transition-aged students, having the right information at the right time was critical.
Knowing there were so many vital issues families of transition-aged students needed to address, The Arc developed and piloted a new training: Mobilizing Families II. Like the original training, this series would address a new round of topics to empower families on the transition out of high school, but would include the student in aspects of the training. This training continued for several years until we launched--in partnership with Easter Seals of Colorado-- a similar statewide training, Training for Transition, in late 2001. Today, The Arc – Jefferson, Clear Creek & Gilpin Counties collaborates with Jeffco Schools and DDRC to maintain the training series that efectively addresses this same issue.
In addition to these trainings, The Arc has worked continuously to promote independence
and choice for sudents in special education through both individualized and sysemic
advocacy. As we have since the law was originally passed in 1975, we continue to ofer
technical assisance to both families and school disrict leadership as they work to keep up
with changing requirements of the law.
Facing the future
In the early 1990s, The Arc – Jeferson, Clear Creek & Gilpin Counties was beginning to
build the framework for the multi-faceted advocacy organization we are today. With a small
program saf, our advocates provided individualized support to people with I/DD of all ages
in a variety of settings; sysemic advocacy through participation on numerous committees;
and promoted self-advocacy for people with I/DD. In the las two decades, we’ve expanded
all of these supports and added a variety of trainings to address the needs of people with
I/DD at various sages of life.
Change has been ever-present throughout The Arc’s ffty year hisory, but there is one thing
that people with I/DD and their families can absolutely count on – we will continue to fight for the systemic and cultural change that will one day create a world that embraces and respects all people with I/DD. As our chapter enters our second half-century, you can rest assured that we will continue to be a catalyst for positive change, inform our community about what’s happening in the world of I/DD, and to offer leadership and guidance to ensure that every person has the opportunity to achieve their dreams.