NEW YORK - None of us wants to ponder what life would be like if we lost a limb; but a new change in policy for the New York State of Health marketplace just made life more manageable for thousands.
At issue was how often and how many prosthetic limbs could be replaced for New Yorkers who rely on what is commonly known as "Obamacare." Heidi Siegfried, project director for New Yorkers for Accessible Health Coverage, said New Yorkers now will be covered if they outgrow prosthetic limbs or if the limbs simply wear out over time.
"So, this means that people will not have to pay out of pocket anywhere from $5,000 to $80,000 to replace a limb," she said, "which they do need replacement, like, every three to five years."
Siegfried said New York lawmakers also are debating a long-term fix this session that would make coverage for these prosthetic devices a matter of law in New York.
Solomon Wolde is a Type 1 diabetic from the Bronx who has two prosthetic devices from leg amputations. The loss of a kidney qualified him for Medicaid and, as a result, his limb replacements are covered. Still, he said he is concerned about other uninsured fellow New Yorkers who need state lawmakers to take action.
"If you don't have insurance, that means I couldn't leave my house. I couldn't go to the hospital or to visit a friend. I cannot do anything," he said. "That means it's very important for people who lose their limbs, so they have to fix the policy."
Siegfried said the replacement issue is important, considering the number of New Yorkers who lose a limb each year.
"In New York in 2012 there were hundreds of people getting upper-limb amputations and thousands of people that needed below-the-knee and above-the-knee amputations each year," she said, "and then, of course, they are going to need repair and replacement."
Siegfried said this is one positive sign as to how Obamacare rules can be improved to meet the changing needs and gaps in coverage for New Yorkers.
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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.
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Oregon's right to repair law, which increases consumers' ability to repair their own electronics, takes effect this week.
The law requires manufacturers to provide access to replacement parts, tools, manuals, as well as digital keys needed so people can fix their own devices.
Charlie Fisher, state director of the Oregon State Public Interest Research Group, helped author the law. He said it needs to go further, which is why, along with disability justice advocates, he is pushing for wheelchairs to be included. Fisher pointed out the current process for getting wheelchairs fixed is overly complicated and takes months.
"Just simple barriers that shouldn't exist are really what we're trying to address in this wheelchair right to repair law," Fisher explained. "It just seems like common sense."
Fisher noted Sen. Janeen Sollman, D-Hillsboro, will introduce two bills this year to expand the right to repair law. One bill would add protections for wheelchairs, the other would simplify the repair process when going through Medicaid.
Wren Grabham, a disability justice activist, has been working on the bills and said additions to the law would require wheelchair manufacturers to post their manuals and allow a person to fix their chair without voiding their warranty.
Grabham noted when she was 16, her electric wheelchair began shutting off and giving an error code. Because there was no public manual for the chair, she did not know what the code meant or if the chair was safe to keep driving. Grabham added fixing it included getting insurance approval, so it took a long time.
"I had to pretty much use an old chair that didn't fit me for six months," Grabham recounted.
Grabham emphasized even simple, routine fixes, like getting a new tire or battery for her chair, take months because she has to prove new parts are needed.
"Even though it's something that we could fix in a weekend, if we were able to actually get the parts to fix them," Grabham stressed.
The Public Interest Research Group's research found being able to fix phones, computers and appliances instead of buying new ones will save the average Oregon household more than $300 a year.
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Nevada education experts say literacy rates are improving, but aren't where they should be.
Nevada's third- through eighth-grade students have improved their English Language Arts proficiency rate to above 41%.
Julie Bowers is the director of the Nevada's Department of Education's Office of Inclusive Education.
She said children who lack literacy proficiency are more likely to struggle academically, increasing the chances of dropping out of school and decreasing their likelihood of finding a job down the line.
The department says it is committed to supporting districts in the early identification of students, so that "interventions" can start sooner rather than later - including for those with disabilities.
"We have unique ways of meeting their literacy," said Bowers. "We have different interventions that we can use for kids with more needs for assisted technology or accommodations within the classroom. But we also have that tiered instruction level."
Bowers said Nevada has a "tiered approach." She said the "multi-tiered system of supports" integrates data and instruction to maximize student achievement and development.
Bowers added that as students are identified as having certain needs, they're given the assistance they need to grow.
Mandy Leytham is also with the state's Department of Education - as an education programs professional with the Read By Grade 3 team.
She said their data indicates reading achievement is rising across all grade levels, including students with Individualized Education Programs.
"Our graduation rates just came out, and we are seeing an increase in graduation rates - including those with students who have IEPs," said Leytham. "So are we where necessarily we want to be at this moment in time, not necessarily, but we are headed towards that direction."
Leytham said parents concerned about their child's progress should have open and honest conversations with their child's teacher, to ensure they reach the best learning outcomes.
"We do have a Read by Grade 3 law, and parents should be not only notified, but they are involved in that planning and decision making on behalf of their students," said Leytham. "So the schools should be involving the parents. Schools just can't do it alone."
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