NEW YORK - New York lawmakers are scrambling to meet this week's deadline to approve the state budget, but health and disability advocates say a change is needed to protect the health of thousands of New Yorkers. Heidi Siegfried, director of New Yorkers for Accessible Health Coverage, said the problem is that Gov. Cuomo's executive budget does away with New York's current requirement that insurers offer consumers a "rider" that allows them to get vital out-of-network health services.

"We're really confused about why the governor wants to remove this important consumer health protection," she said. "It doesn't save any money, and it really endangers people's lives."

The problem is that a given network of providers does not always include every needed service, such as specialized treatment for cancers and some rare conditions. Siegfried said Cuomo may be unaware of just how drastic the consequences of this change would be, and she hopes lawmakers will restore the rider.

The change Cuomo wants will not only affect New Yorkers in the years ahead, she warned, but it will also sever existing coverage for thousands, many of whom battle life-threatening illnesses.

"In addition, he has allowed the insurance companies to cancel the policies of 5,000 people with various illnesses and disabilities who are depending on being able to see out-of-network providers in order to survive," she said.

Without the state requirement, many local health groups are concerned that the out-of-network coverage could disappear for New Yorkers seeking coverage on the individual market, she explained.

"The Hemophilia Association, HIV organizations, those who serve people with lupus - all are calling upon the governor to not remove this important protection," she said.

While the state health care exchange will allow 1 million additional New Yorkers to get coverage, she urged the governor and the state to also ensure that the out-of-network option is available for those who need it for life-sustaining coverage.

The governor's press office had no comment.






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March is Developmental Disabilities Awareness Month, and this year's theme is "Beyond the Conversation". In Indiana, that could mean 'less talk and more action' to create job opportunities for adults with disabilities. The unemployment rate for people with disabilities is more than double the rate for those without a disability, and only 40% of people with disabilities are in the workforce, according to the Labor Department.

Hannah Carlock, senior director of public affairs with The Arc of Indiana, said they are as productive as any other group of workers.

"They want to be a part of the Indiana Hoosier workforce," Carlock said. "And so, we are working on that, because there are so many open jobs in Indiana, and we have people available to fill those jobs. And people with disabilities want to be a part of that solution."

Indiana has a Bureau of Developmental Disabilities Services, but it does not focus on employment or job training. The Arc is one organization that offers information about jobs and education, in addition to housing options. The group also advocates at the Statehouse for fair treatment in workplaces and schools, she said.

Developmental disabilities include autism spectrum disorders, speech or learning impairments and even hearing loss. They are often detected during routine doctor visits in the first few years of life. Carlock said some disabilities are more easily recognizable than others, and the people who live with these conditions are capable of endless possibilities - as long as their employers are willing to adapt.

"Autism, Down syndrome, cerebral palsy, that could be a learning disability. It might just take somebody more time to complete a task, because they move a little bit slower or read a little bit slower. Or they might have to take a break from something because they're overstimulated," she said.

The Centers for Disease Control and Prevention says about 12% of Indiana residents have cognitive challenges; another 11% live with either hearing or vision loss.

To recognize Developmental Disabilities Awareness Month, state lawmakers have signed a resolution to raise awareness surrounding people with disabilities in Iowa. Advocates are calling for continued awareness and education about the issue.

This is the first time Iowa lawmakers have made an official designation for Developmental Disabilities Awareness month. Both the House and Senate passed a resolution yesterday.

Brooke Lovelace, Executive Director of the Iowa Developmental Disabilities Council, said disabilities can stretch across the population and often go unnoticed.

"A person with a developmental disability could be your co-worker," said Lovelace. "It could be a customer that you work with. It could be your neighbor, classmates, friends, obviously family members. It really can touch everybody's life."

Lovelace said the council is asking people with developmental disabilities to share art work and other success stories to raise awareness of the positive impact they are having statewide.

Beyond the legislative resolution raising awareness, Lovelace said it's important for people with disabilities to be heard, and for policy makers to seek their opinions when they are shaping legislation that may affect them.

"We're also talking about how important it is that people with disabilities have a seat at the table," said Lovelace, "and make sure policies that they may be recommending won't have a negative impact on people with disabilities and so that's part of the education that we are doing this month as well."

Someone has a developmental disability if they have been diagnosed prior to the age of 22 and includes people who have autism, cerebral palsy, a learning or intellectual disability, or a vision or hearing impairment, among other things.

For Missourians with a disability, earning too much money, or having a spouse earn too much, can mean losing important Medicaid health coverage.

State Rep. Melanie Stinnett, R-Springfield, said she observed this problem when young people she had worked with as a speech therapist shared some of the struggles they faced after entering the workforce. Stinnett introduced House Bill 970 to increase how much both an individual and their spouse can earn before losing Medicaid benefits. She said Medicaid covers indispensable services, such as personal-care assistance.

"Individuals that come and help these individuals get up, get out of bed, get showered and dressed sometimes, so that they can get out and get to work," she said.

HB 970 would raise the amount a single Missourian with a disability can earn without losing benefits from roughly $41,000 to $88,000 per year, and married couples from $88,000 to $116,000. Although this may sound high, Stinnett said, the cost to pay for personal-care assistance out of pocket can be substantial, and many private insurance companies don't cover it.

An in-home health aide for just three hours a day in Missouri can cost more than $25,000 a year.

HB 970 also would remove the first $50,000 a spouse earns from consideration in the couple's total income. She said it's an important piece of the bill that could solve an unintended problem.

"We have inadvertently disincentivized marriage," she said, "in that individuals with disabilities are often choosing to either not get married, or sometimes even choosing to get divorced, so that they don't lose those necessary benefits."

Missourian Rachel Baskerville, who lives with a disability, said she feels lowering the impact a spouse's income has on one's eligibility is a matter of equalizing things.

"Non-disabled people don't have to look at certain restrictions with who they fall in love with and who they marry," she said, "and so I feel like, as a person with a disability, I shouldn't have to look under certain guidelines to see who I can fall in love with."

Stinnett also introduced House Bill 971 this session, which would require state agencies to submit annual reports showing steps they've taken to recruit, hire and advance individuals with disabilities.