DENVER -- As infrastructure legislation makes its way through Congress, advocates for people with disabilities are urging lawmakers to boost investments for in-home care programs that would allow more people to avoid placement in nursing homes.

Christiano Sosa, executive director for Arc of Colorado, said the Better Care Better Jobs Act would dramatically improve quality of life for people with disabilities.

Sosa pointed out the proposal would raise wages for caregivers, and provide benefits including paid family leave, which will help make direct care work a viable career path and reduce turnover.

"One of the things that we hear loud and clear from individuals with disabilities and families is that it's almost a full-time job just training the new person," Sosa observed.

Caregiver reimbursements have not kept up with inflation or even local minimum wages, and Sosa sees the proposed $400 billion investment in Medicaid Home and Community-Based Services as an important step to reverse decades of underfunding.

Congress has remained divided along party lines over so-called human infrastructure investments. Republicans say the price tag is too high, and worry it would lead to bigger government.

Lack of funding has led to long waiting lists for rationed in-home care services, which leaves many no choice but to turn to nursing homes.

Henry Claypool, policy director for the Community Living Policy Center at Brandeis University, said blocking the proposal would be penny-wise but pound-foolish. States are required to accept nursing-home residents regardless of their ability to pay, which costs taxpayers exponentially more than community-based care.

Claypool believes the proposal is ultimately about giving people more options.

"If you're in an institution like a nursing home, you're not able to get up and go when you want, you're totally dependent on when the staff can get to you," Claypool explained. "Most Americans really want to stay in their homes, and this is an important investment to make that happen."

Sosa noted if Congress does not invest in community-care options, the burden will continue to fall on unpaid family caregivers, which historically have been women and people of color. Sosa added the legislation should also boost recovery from the pandemic's economic fallout by providing good jobs for direct-care workers, and allowing family caregivers to rejoin the workforce.

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.