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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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."
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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.
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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.
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