NEW YORK — A cut in state funding will severely impact a program that helps people with disabilities remain in their homes. That's the message advocates for people with disabilities want Gov. Andrew Cuomo to hear.

The Consumer Directed Personal Assistance Program allows people who need home care to hire those who provide that help, including friends or family members. The program helps more than 70,000 New Yorkers get paid assistance from people they already know and trust instead of relying on agencies to send strangers into their homes.

The state budget cut the funding for the fiscal intermediaries who administer the program by $150 million. According to Heidi Siegfried, director of health policy with the Center for Independence of the Disabled New York, that will effectively end availability of the program for many participants.

"Fiscal intermediaries are saying they're just not going to be able to manage this,” Siegfried said. “And having hundreds close their doors means there's going to be no other fiscal intermediary that the worker and the consumer can turn to to continue to provide the service."

The state's budget office said the cut will not reduce the number of people enrolled in the program or the hours of care they receive.

The Cuomo administration said from 2012 to 2018, the number of fiscal intermediaries rose from 58 to more than 600 with little quality control. But Siegfried pointed out the state has only analyzed cost reporting from about 10% of those intermediaries.

"The Department of Health should be getting cost reports from every fiscal intermediary, and they should really do an analysis of what it costs to run the program so that it wouldn't go under,” she said.

Siegfried said the size of the funding cut was predetermined, not based on the actual cost to administer the program.

She noted that if the fiscal intermediaries who administer the program close, many people will be forced to get their assistance through home health-care agencies or to go into nursing homes.

"In low-income communities in particular, where you're not going to get an unpaid caregiver to care for you, it's really important to be able to not have an agency worker but be able to pay a worker that you know and trust,” Siegfried said.

More information is available here.

Thirteen students, ranging in age from 14 to 21, have just graduated from the Iowa Developmental Disabilities Council Youth Leadership Academy.

The program's goal is to develop young leaders who learn skills that build their confidence.

A dozen students from Iowa welcomed one from Illinois who is attending school in Iowa. Together, they learned during the weeklong academy how to be more effective advocates for their communities.

That's exactly what 21-year-old Andrew Allen, who has been diagnosed with ADHD, autism and severe separation anxiety, was looking for when he applied.

"I got bullied a lot," said Allen. "When I was in school, I got pushed aside a lot and I thought, 'Enough is enough.' They taught me how to communicate, have conversation with special needs, and help our community."

The annual academy teaches students ways to advocate for themselves, become more civically engaged and to be of service in their communities.

19-year-old University of Iowa student Jackie Corless, who said she has an intellectual learning
disability, also took part in the Youth Leadership Academy.

She said the topics ranged from advocacy to communicating, and lots of useful skills in between.

"Leadership skills," said Corless. "I learned about networking, setting goals - you know, the difference between how to be an advocate and how to better strengthen your advocate goal. How networking really works within the disability world."

The Youth Leadership Academy is a partnership between the Iowa Developmental Disabilities Council, Disability Rights Iowa, ASK Resource Center, the University of Iowa Center for Excellence in Developmental Disabilities, and Access to Independence.



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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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