For decades, organizations like Adelante have been operating under the guidance and requirements of the Jackson lawsuit. Over 30 years ago, the Jackson lawsuit spurred the closure of state-run institutions. People with disabilities and their services moved into the community. It began with one family, became a class action, and an entire group of people became a part of it. Lawyers, the State of New Mexico, and providers operated under the guidelines of the Jackson suit, in an effort to protect people with disabilities from abuse and neglect. This week, the lawsuit that transformed disability care in New Mexico officially came to a close. As a result, it feels important to stop and think about the disability community before the lawsuit, how it came about, and the results of Jackson in our state.
How the Jackson Lawsuit Started
In 1985, Walter Stephen Jackson was forced to drink from a cup of oven cleaner. He was rushed to a hospital in Albuquerque. Though he survived, he still needs special care to help him breathe clearly due to the scarring.
By 1987, the parents and guardians of twenty-one people with developmental disabilities had filed a federal class action lawsuit against the Department of Health, the Human Services Department, the Division of Vocational Rehabilitation and several state officials. The suit was named on behalf of Walter “Stephen” Jackson and it facilitated major changes in the disability field across New Mexico. That included the closure of the state-run institutions in Los Lunas and Fort Stanton.
Recently, we had the chance to talk with our Board Chair, Ryan Baca, about this lawsuit. Ryan’s grandmother, Helen Jackson, who served on Adelante’s Board of Directors for many years, actually was the person who started the suit on behalf of her son Stephen. Helen felt compelled to not only protect her son, but every person with a disability who was isolated and mistreated within the institutions. Ryan remembers as a small child, sitting outside the institution in Los Lunas while her grandmother recorded troubling situations occurring inside. She reflected on the incredible strength her grandmother must have had to do that. “Can you imagine being a mother and having to witness and record your child being abused?” Helen Jackson was convinced that documenting the abuse was the only way to prove what was going on. And, perhaps, the only way to put a stop to it once and for all. Today, Ryan serves as Stephen’s guardian and is Adelante’s current Board Chair.
Conditions at the Institutions
Court documents reveal that Stephen dealt with a long history of abuse and neglect in the 22 years he lived at the Los Lunas Hospital and Training School, above and beyond the oven cleaner incident. He was not alone in his experience. As the dire situation came to light, U.S. District Judge James Parker ordered the state and the lawyers, representing approximately 700 people with developmental disabilities, to come up with a plan to move former institutional residents into surrounding communities and to improve conditions at the state-run sites by September 1991. By the mid 1990’s the state had closed the Los Lunas and Fort Stanton Hospital and Training Schools. All the former residents were relocated to community providers, including Adelante.
Board Chair Ryan Baca reflects, “My grandmother spearheaded these efforts, and it is the legacy she left for our family, this state, and this country. The court dismissed the lawsuit because the state has fully complied with the settlement reached three years ago. The coverage you read won’t tell my uncle’s story. It will gloss over the abuse he suffered. It won’t tell my grandmother’s story. The tears she shed, the vitriol she faced, and the fierceness of her fight to protect her child. It won’t tell the story of hundreds who have spent decades on a waiting list to access the services created as part of the lawsuit. These are real people who suffered and endured to create positive change for others. Our state is better (not perfect, but better) because of my grandmother.”
How the Lawsuit Changed Disability Care in New Mexico
By the time the lawsuit happened, there were already multiple organizations supporting people with disabilities in the community. Adelante is just one example. Community-based care was a new idea in the disability field in the late 1970’s. Most people with disabilities had been separated from their families and placed into institutions. Even if they were kept at home, people with disabilities were often not seen outside their family. This was true across the country during that time frame. Adelante and several other organizations were on the forefront of an emerging standard of care.
At one point, our current VP of Community Operations, Reina Chavez, recalled that Adelante was opening a location every month just to keep up with the influx of new clients as people left the institutions. There is little doubt that the Jackson lawsuit brought lots of positive changes. Especially for people who had been in institutions for a majority of their lives.
Leaving the institution has allowed people with disabilities to be a part of their communities and experience the beauty New Mexico has to offer. To live in homes of their own with support, or to receive 24/7 care as they need it, with their own rooms rather than shared spaces. People, many for the first time, were able to choose what they wanted to do and where they wanted to go. People found jobs or volunteer opportunities where they have valued roles. They have friends to visit with. They go on vacations, attend sporting events, and so much more. Lives have truly been made better.
What the Settlement Can Mean
Adelante was honored to have Helen Jackson on our Board of Directors for years and to have Ryan as our Board Chair. We share Ryan’s opinion that there is still work to do.
At a time when state officials are trying to clear off the waiting list, many providers have had to place themselves on a moratorium on bringing in new clients because they can’t find staff members. Even with incentives, including a hiring bonus, hiring has been slow at Adelante.
As the disability system in New Mexico is stretched to support those currently receiving services, more needs to be done. Adelante looks forward to working with our state partners to strengthen the provider network here in New Mexico.
The world needs to value the work of caregiving. Not only for people with disabilities, but also the booming number of seniors reaching an age that they, too, need care.
Furthermore, as Ryan shared, in the end, it’s all about the people. The people who endured. The families that brought about the lawsuit and the changes. The leaders and organizations that can make a difference going forward. And, especially, the people in our care and those who do the caregiving.
At Adelante, we are focusing on the positive aspects that Jackson brought about. We also remain hopeful that the disability field can more closely focus on caring for each person and their unique goals. Reading a favorite book, exploring a museum, taking part in cultural activities, or finding a great job. Those activities create rich and fulfilling lives. The kind worth fighting for.