NEW YORK - Advocates for people with disabilities say the cap New York put on Medicaid spending in 2011 doesn't keep pace with growing health-care needs and they're urging lawmakers to finally repeal it.

Gov. Andrew Cuomo's 2021 to 2022 budget proposal calls for extending the Medicaid cap for two more years.

But according to Heidi Siegfried - director of health policy at the Center for Independence of the Disabled New York - the cap is arbitrary, unrelated to growth in Medicaid enrollment, and unresponsive to medical needs.

"It's really affected people with disabilities," said Siegfried, "who rely on long-term home care in particular to stay out of nursing facilities and to get the services they need to remain in their home."

She said lawmakers in both the state Assembly and Senate have introduced legislation to repeal the Global Medicaid Cap.

With the pandemic, Medicaid enrollment in New York has increased by more than 700,000 in the past year. And Siegfried noted that last year Cuomo wanted to limit eligibility for home care under the program.

"Even before the increase in enrollment," said Siegfried, "we saw that the services that we rely upon are the services that are really being targeted for cuts. And it was driven by the Medicaid global spending cap."

The cap also allows the state's Division of the Budget to unilaterally cut the Medicaid budget in mid-year without legislative oversight to keep spending under the cap.

Siegfried pointed out that the federal government generally picks up about half of Medicaid costs in the state, and during the pandemic that has been increased.

"And in the most recent relief bill that was signed by President Biden," said Siegfried, "they put an additional increase for Medicaid if the state would spend it to improve home and community-based services."

She added that, with few exceptions, home care is less expensive than forcing people into long-term care facilities.

Tennessee's Disability Day on the Hill is an opportunity for people living with a disability to unite, and engage in the legislative process.

The Centers for Disease Control and Prevention reports nearly 1.6 million Tennesseeans have a disability.

Carrie Carlson, director of community engagement with the Tennessee Disability Coalition, said people are encouraged to meet them for the Disability Day on the Hill in Nashville.

The event focuses on issues and challenge policies that threaten protections under the Americans with Disabilities Act.

"Disability Day on the Hill is a day where hundreds of people with disabilities will come to Nashville, to Cordell Hull, and get involved in the legislative process," said Carlson, "meaning having meetings with their Senate and House of Representatives."

She said Tennesseans with disabilities face unequal access to education, housing, transportation, and health care.

The theme for Wednesday's event is Liberty Not Limits, which means having a disability should not limit your liberty to live the life of your choosing.

Carlson said Tennesseans are encouraged to light up and wear "coalition blue," and post to social media in support of Disability Advocacy Day.

She added that this will be the fifth year recognizing March 11 as Disability Advocacy Day, with an annual proclamation that highlights the strength of advocacy efforts.

"Disability Advocacy Day," said Carlson, "is a day where specific landmarks across the state of Tennessee in each region West, middle and East go blue to show the amazing accomplishments and advocacy efforts of Tennesseans with disabilities."

Carlson said Disability Advocacy Day began with key landmarks in Tennessee lighting up blue to raise awareness, and chosen to address transportation barriers.

Now, it has expanded as communities participate in their own ways - lighting homes, wearing blue, and gathering for photos to show support for local advocacy work.



get more stories like this via email

By Tim Spears for WISH-TV.
Broadcast version by Joe Ulery for Indiana News Service reporting for the WISH-TV-Free Press Indiana-Public News Service Collaboration

In the face of Medicaid cuts, autism advocates in Indiana are focusing on protecting coverage of a popular therapy.

As News 8 reported, the Indiana Family and Social Services Administration will reduce Medicaid coverage of applied behavior analysis, or ABA therapy. Individuals will be limited to between 30-38 hours of ABA per week, depending on their diagnosis, and will only be covered for a total of 36 months. 

That three-year coverage cap was initially planned to be retroactive, but the FSSA changed course this past Friday following widespread pushback. The changes go into effect April 1. 

Parents like Jana Tiede believe ABA coverage should be based on existing need, not how long a person has needed it.

“With the help of ABA she’s really starting to put together those social connections,” Tiede said. “Just to say that an arbitrary three-year mark for someone like Ryah, that doesn’t seem appropriate to me.”

ABA therapy is behavior based, helping individuals with autism improve communication, socialization, and development. 

When the FSSA first proposed cuts to ABA coverage, Tiede said she reached out to her local lawmakers, State Rep. Hunter Smith (R-Zionsville) and State Sen. James Buck (R-Tipton Co.). 

She said she felt ignored when neither responded. 

“I was really hoping that a dialogue could be created and it was pretty disappointing,” Tiede said. 

The Autism Society of Indiana (ASI) is planning an advocacy day at the statehouse, Monday, so people can directly share their stories with lawmakers face to face. 

“We feel a lot of lawmakers don’t even know what autism is,” ASI Dir. of Training & Legislation Rachel Deaton said. “If a lawmaker understands what a parent is going through, from the time they wake up to the time they go to bed and how much ABA is helping them, they might be willing to advocate for it.”

Indiana is trying to get ABA spending under control after an audit found the state made at least $56.5 million in improper Medicaid payments for ABA services over the course of a year. 

The ABA cuts also come as the Braun Administration initiates a larger Medicaid crackdown by increasing eligibility checks, supporting legislation to add work requirements and enrollment caps, and ordering providers to stop advertising Medicaid programs. 

John Lotz, whose son Drake went through ABA, believes these changes are focused on regulating the parents rather than providers. 

“Our children are discriminated against every day,” Lotz, an advocacy leader with Indiana Profound Autism Alliance, said. 

He wants the FSSA to avoid implementing the three-year cap, and instead base coverage on need. He also doesn’t think it will do much to curb improper billing. 

“You’re really not going to hurt the [ABA] centers because they’re just going to re-adjust their business model to bring in more kids for fewer hours,” Lotz said. “The ones that are going to be pushed out are the ones with the greatest needs.” 

ASI will be at the statehouse from 9 a.m. to 2 p.m. Monday. Deaton emphasizes there are no plans for a protest, but the organization will inform people how to advocate for policies to protect people with autism.


Tim Spears wrote this article for WISH-TV.


get more stories like this via email

New York disability rights advocates want state lawmakers to focus on issues such as housing and health care.

In the budget, they want more funding for mental health crisis units and to grow the mental health workforce. New York is facing a shortage in all aspects of mental health care, which keeps people from being able to access necessary services.

Sharon McLennon-Wier, executive director of the Center for Independence of the Disabled New York, said they are also advocating for a bill creating accessible prescription labels.

"There's a bill right now for people that are blind or have print disabilities to make sure they are able to read and understand their prescriptions," McLennon-Wier explained. "A lot of labels are difficult for seniors as they have vision loss or people that have dyslexia or other reading disabilities to understand."

For now, at least 10 states have laws in place ensuring pharmacies provide accessible prescription labels. A handful of states such as New York are considering similar laws. Gov. Kathy Hochul's budget proposal also invests in mental health care.

McLennon-Wier feels the money should go toward life-changing treatment which is not forced on people who need help.

There could be challenges to ensuring the laws are passed and some programs are properly funded. Along with competing priorities, McLennon-Wier feels federal challenges could harm New York's progress on disability rights.

"If we look at our federal system, there's not enough compromise, I think," McLennon-Wier observed. "There's not enough funding. I mean, New York State has a rich budget, many, many, many billions of dollars. So, we need to be able to work together to address the problem and have some equity."

While lawmakers are addressing some priorities, McLennon-Wier feels it is not enough. She noted the Long-Term Care Ombudsman Program, which provides statewide oversight of nursing homes, is getting more funding but based on previous recommendations, it is not enough to be effective.