SPRINGFIELD, Mo. - The question of guardianship may seem like a simple decision to be made, but being placed under guardianship can have devastating effects for a person with developmental disabilities. It's often seen as the only option when a person needs assistance or support in making decisions, but disability advocates say it can lead to a loss of freedoms.

Preliminary results from a project on guardianship in Missouri show that more work needs to be done to educate the public about the rights of people with developmental disabilities.

Five years ago, Cristal Chapman says someone filed a petition to place her under full guardianship when she began having some personal difficulties as a result of her disabilities. She says she was forced to live hours away from her husband in a locked-down facility and had to give up some of her civil and human rights, even though she had done nothing wrong.

"They took away my freedom of religion. There was one point where they wouldn't let me talk to, see or write my husband. It was pretty bad."

With assistance from Missouri Protection and Advocacy Services, through the Guardianship project, Chapman successfully petitioned the court and restored her rights. Chapman is again living independently with her husband, and making her own decisions.

Dolores Sparks, program specialist with the Missouri Planning Council for Developmental Disabilities, says many people with developmental disabilities and their families aren't aware of all the programs available to provide support for independent living in their own community. So a decision is made about guardianship, she says, without having all the information.

"That's a very big missing link here, that people just assume that if their loved one needs a guardian then you just go to court and you just get full guardianship."

Sparks says the three-year study project on guardianship wraps up later this year.

Supporters of guardianship say it's an option when a family member can't take care of a loved one with a disability.


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New York disability-rights advocates are celebrating the 34th anniversary of the passage of the Americans with Disabilities Act.

The 1990 legislation prohibits discrimination against people with physical or mental disabilities. Along with becoming a standard part of employment law, it bolsters accessibility in the public environment.

As seminal as the ADA is, said Dr. Sharon McLennon Wier, executive director of the Center for Independence of the Disabled New York, more work must be done to achieve true accessibility.

"Even though ADA has been around for many, many years," she said, "there is still ignorance regarding what is true accessibility and how new construction at times can still be put up without following the principles of ADA universal access."

Downstate New York's transportation systems lack ADA compliance. Only 31% of New York City's Subway system is accessible to people with disabilities. Funding has been allocated to make the system 95% compliant. The work would have been done by 2055, but since Gov. Kathy Hochul paused congestion pricing, these plans have been put on hold indefinitely.

A New York City Comptroller report finds only 40% of the city's disabled population is employed. Statewide reports show post-pandemic employment for people with disabilities is recovering much slower than the nation.

To change this, said McLennon Wier, classroom instructional materials need to be more accessible, "having more raised line drawings, having more Braille available, having more assistive technology that can read various types of charts and diagrams."

She said she thinks certain industries are siloed, but once they open up to better comprehend universal accessibility, more people with disabilities will join them. One place this can work is in STEM fields, as only 3% of that workforce includes people with disabilities.

July is Disability Pride Month, and today is the 34th anniversary of the signing of the Americans with Disabilities Act.

Federal data show that more than 42 million Americans have a disability affecting their cognition, mobility, hearing, vision or ability to provide self-care or live independently.

"Studies over and over demonstrate that people with disabilities are a very solid
part of our workforce," said Joe Xavier, director of the California Department of Rehabilitation, which helps people with disabilities thrive at work. "They stay in their jobs, they're committed to the work that they do, and so there's much less turnover with people with disabilities, thereby reducing the cost and all the work associated with that."

Advocates have said companies are responsible for providing accommodation in the same way they provide chairs and technology for all their workers. They encourage companies to follow principles of universal design when building new spaces, so access is not an afterthought.

Britanny Comegna, a member of the State Rehabilitation Council, runs a company called Deaf and Disability Mediation Services and said people shouldn't be shy about direct communication with disabled people.

"When you meet a new disabled person," she said, "you have to ask, 'How do you want to identify? What do you need? And what can I learn from you?' Ask those questions because we really do appreciate that you're making that effort to connect with me and understand me as a person."

The Centers for Disease Control and Prevention is working to reduce health disparities among adults with disabilities, who have higher rates of smoking, obesity, heart disease and diabetes.


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Advocates for individuals with disabilities want the state of Nevada to further embrace what is known as the "independent living" model.

Dawn Lyons, executive director of the Nevada Statewide Independent Living Council, said the philosophy is centered around people with disabilities being their own experts on their needs and the services they require. Lyons acknowledged within the state's disability community, there exists what she called "inter-conflict," leading to a lack of a unified voice and sending mixed signals to policymakers.

"Even though we have these other voices interfering, saying different things, what it comes down to is 'We don't need to fight each other,'" Lyons emphasized. "I think the reason why we end up with that inter-conflict is because we've been put down so often and we've been told that we don't matter."

Lyons has been with the council for the last eight years and pointed out progress has been made but more needs to be done. She argued education related to independent living is key to moving the needle and the council supports developing educational materials as well as consulting with a state currently employing an effective independent living approach. Lyons explained one of those states could be Colorado, which she adds even has its own independent living agency.

John Rosenlund, program director for the Nevada Assistive Technology Collaborative, said independent living boils down to empowerment. He said he recognizes the state cannot move forward with implementing a philosophy if there are those who do not agree with it or are comfortable with the status quo.

Rosenlund contends centers for independent living across the state have strayed from independent living values such as peer support, individual and systems advocacy and independent living skills training.

"Things aren't right, they've lost the meaning of what independent living is, perhaps," Rosenlund suggested. "Or they're too focused on certain things so that stability at centers for independent living is, in my mind, instrumental."

Rosenlund added the lack of awareness and adoption of independent living's core values is having real effects across the state, with some missing out on real opportunities to enhance their lives. He reminded people without any change or challenge, there will not be any growth.