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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Two bills making their way through the Colorado General Assembly would make it easier for people with disabilities to access college and other public institutions of higher learning.

House Bill 1107 would fund proven strategies for making college more universally accessible. Christiano Sosa, executive director of Arc of Colorado, said people with intellectual and developmental disabilities should be able to have the same experiences in college as everyone else.

"Participate in the rights of passage that many folks are afforded through the college experience," said Sosa, "living in the dorms, living on campus - and having the supports needed to do that effectively."

HB 1255 would create an advisory committee to outline ways to improve outcomes for students with disabilities attending state institutions. The measure cleared both chambers and awaits a signature by Gov. Jared Polis.

HB 1107 is still under consideration by the Appropriations Committee.

Sosa said the two measures combined would give Coloradans with disabilities real opportunities to escape poverty. It's estimated that 85% of individuals with intellectual disabilities are not working, or are under-employed, despite their willingness and ability to contribute to the workforce.

"And higher-ed historically has been that stepping stone to get the good jobs, so that folks do not need to live in poverty," said Sosa. "And that's why we're excited about this bill."

Sosa said when students with disabilities can access college, they go on to earn degrees and certificates in health care, advocacy, brewing studies and more.

Sosa said creating a more inclusive campus experience can also help more people reconsider the contributions the disability community is capable of making.

"And the more people we have in institutions of higher education," said Sosa, "I think we begin to break down some of these stigmas, and some of these stereotypes."

Missouri is launching an apprenticeship program to expand talent pipelines for Direct Support Professionals, who work with people with developmental disabilities.

The Show-Me State, like many others, is facing a serious direct-care workforce shortage. To answer the need, the program Missouri Talent Pathways was recently approved by the U.S. Department of Labor.

Duane Shumate, state coordinator of employment and community engagement in the developmental disabilities division of the Missouri Department of Mental Health, said it blends on-the-job mentoring with technical instruction, with participants eventually becoming Certified Direct Support Professionals.

"It tremendously impacts families and the individuals with a disability, that the families are having to take a lot of time off of work to provide care, because there's not an adequate workforce," Shumate explained. "It just creates a lot of risk and concern by having such a high turnover in this field currently."

In addition to reducing the impact of high turnover rates, Shumate pointed out another goal is to make sure apprentices are well-trained in national best practices to support people with developmental disabilities in achieving their own personal goals and outcomes.

Jessica Bax, director of the division, said Missouri is approaching the workforce shortage from multiple angles. She noted Gov. Mike Parson supports increasing the reimbursement rates for direct-care providers, along with the apprenticeships and other talent-pipeline programs.

"One of the major benefits of having an apprenticeship program as a talent pipeline is the proven benefits of the tenure," Bax emphasized. "Individuals tend to stay in the employment, and one of the biggest impacts on the success of the individuals that we serve is consistency."

Data from the Department of Labor shows three years after completing an apprenticeship, folks are often still employed at a nearly 90% retention rate.

Bax added the program is the first of its kind, and other states are looking to Missouri to replicate the model.

As Developmental Disabilities Awareness Month comes to a close, advocates say the work to secure equal rights and independence for people with disabilities continues.

The Missouri Developmental Disabilities Council (MODDC) is among those working to spotlight the issues that matter most to the communities they serve.

Animesh Shah, chair of the Council, said it is important for everyone to be aware of the challenges people with developmental disabilities face, from issues around independence and guardianship and workforce training to criminal justice and first-responder disability awareness.

"The idea of accessing a variety of services that others take for granted. For example, government services or accessing a restaurant or accessing a website," Shah outlined. "There are also a variety of issues in the education system and in the criminal-justice system that we hope that with the advocacy we'll be able to do much better than what we are able to do today."

One in three Missourians has a disability. Shah pointed out many resources are available in Missouri and across the country to help people thrive if they know how to access them.

Shah entered disability advocacy after his daughter was diagnosed with Rett Syndrome. He struggled at first to navigate disability-support networks, but noted groups such as MODDC are there to help individuals and their families or caregivers access resources.

"My goal is that eventually we reach to a level where every individual is self-aware of their capabilities, their rights," Shah remarked. "And people around that individual are working to uplift people with disabilities and not just create roadblocks."

Shah added MODDC also is working to support a training program for individuals with developmental disabilities to become self-advocates. Developmental Disabilities Month was started in 1987 and has been recognized as a time to support individuals with disabilities ever since.