NEW YORK – As the U.S. Senate takes up its health care bill again this week, advocates for people with disabilities are concerned that cuts to Medicaid could limit benefits that provide critical care.
The Republican Party’s plan unveiled before the July 4 recess would cut Medicaid funds to New York by $7 billion over four years.
According to Heidi Siegfried, director of health policy at Center for Independence of the Disabled, New York, that could force the state to consider cutting benefits and services that Medicaid refers to as "optional."
"Rehab – like physical therapy, occupational and speech therapy – that is one New York cut five or six years ago,” she points out. “Prosthetic devices, durable medical equipment, like wheelchairs."
Though the number of Republican senators saying they won't support the GOP bill has grown, Siegfried fears the alternative that will emerge is likely to include deep cuts to Medicaid as well.
Services that make independent living possible also could be cut. Currently, Medicaid requires states to cover nursing home care, which Siegfried notes is very expensive and often contributes to declines in patient health.
"Services to keep people from going into a nursing home – like personal care aides and the services that you would need to continue to live in your own home – those are optional," she points out.
Siegfried explains that "mandatory" and "optional" are statutory terms that don't reflect medical necessity, but may influence decision-making.
Polling shows a majority of Republicans think of Medicaid as a "welfare program" rather than a health insurance program.
But Siegfried points out that Medicaid covers children as well as adults, and is especially critical for older New Yorkers and those with disabilities.
"We have to get people to understand that this is not just a program that serves low-income people, that it serves middle class people that have high needs," she stresses.
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Disability groups in New Hampshire are calling for an end to the word "special" to describe people with disabilities.
They said terms like "special" or "special needs" imply people are somehow broken and undermine the long-term fight for disability rights.
Isadora Rodriguez-Legendre, executive director of the New Hampshire Council on Developmental Disabilities, said when people ask not to be called a certain word, it should be reason enough not to use it.
"It really is a label that kids and adults with disabilities found to be alienating," Rodriguez-Legendre explained. "Because it kept them apart and separate."
Rodriguez-Legendre pointed out a new public awareness campaign encourages people to visit the website stopspecial.org and read a more appropriate language guide. Nearly one of every eight New Hampshire residents has a disability.
Backers of the "Stop Special" campaign said language is evolving and such euphemisms as "special needs" or "special education" need correction. Rodriguez-Legendre emphasized students should simply be called "students," or even "students with disabilities." She understands it will not be an easy change, especially for those who work with laws and regulations but added the goal is to ensure equitable access to education and public spaces.
"Communities actually are better when people with disabilities are participating in them, because they bring awareness about how to make things more accessible for everybody," Rodriguez-Legendre contended.
The "Stop Special" campaign is backed by the Institute on Disability at the University of New Hampshire, the Disability Rights Center of New Hampshire and the New Hampshire Council on Developmental Disabilities.
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The U.S. Office for Civil Rights has issued a ruling ensuring that an Iowa man with disabilities is able to live in his home and receive round-the-clock medical care.
Advocates for people with disabilities hope the move sets precedent for other people in Iowa and around the country.
When he was about five, Cedar Rapids resident Garret Frey suffered the same spinal cord injury that Superman star Christopher Reeve did in an equestrian accident.
Reeve lived for about a decade after his accident.
Frey is closing on 40 years, and sued the state, claiming it violated his rights by failing to provide the 24-hour home-based support and services he needs to live at home, where he said people with disabilities want to be.
"It is truly where most of us are happy, healthy," said Frey, "and it's most cost-effective."
The U.S. Department of Health and Human Services agreed to raise the provider reimbursement rate for in-home caregivers, allow for respite services, expand the health-care provider base - and help secure overnight, in-home nursing care for Frey.
HHS will monitor Iowa's progress for a year. Frey said he wants this ruling to set precedent for other people with disabilities in Iowa and across the country.
"It's one baby step in the right direction," said Frey, "because there are many other disability-related concerns and issues that are ongoing."
The ruling requires Iowa Health and Human Services to work with federal officials to ensure Frey's needs are met during that year, and report on their progress monthly.
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Teens and young adults in Texas who have disabilities have an opportunity to get a paid internship this summer.
The Texas Workforce Commission offers its Summer Earn and Learn program for students between the ages of 14 and 22. The students are placed with large and small businesses to earn a paycheck and learn valuable work experience.
Joe Esparza, the commissioner representing employers, said all 28 workforce development boards across the state participate in recruiting students and employers
"The employers are obviously benefiting because they're investing in their communities, and they get somebody who's motivated to work," Esparza explained. "I think having that opportunity gives these students a chance to interact with customers, to learn IT systems, to just engage in something that they are very interested in."
He said more than 14,000 students have been placed in internships since the program started in 2017.
More than 1,300 employers across Texas participated in the program last year, giving students hands-on experience. Some of the businesses include the Amarillo Zoo, the Fort Worth Botanic Garden and Odessa College. Esparza noted the internships last five to eight weeks and student participants attend work readiness training to prepare them for their work experiences.
"We at the state level always encourage employers to get involved and create programs," Esparza emphasized. "In most every business, there's usually an opportunity to bring somebody in as an internship and it's a great opportunity for them to learn new skills and become part of the workforce there."
Some of the students have been hired full-time by the companies at the end of their internships.
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