In 2020, North Dakota reached a federal settlement regarding institutionalized care for people with disabilities.

As they carve out a newer vision, state officials are getting the word out about programs giving residents with disabilities more pathways to community care. The Department of Human Services (DHS) is highlighting initiatives designed to help people with disabilities make a smoother transition from an institution to a community setting.

Jake Reuter, program administrator for the DHS, acknowledged the state has a long way to go to improve access, but he noted demand for the programs is a good sign they are reaching the people they need to reach.

"We're having many, many referrals for services to help prevent institutional care in the first place," Reuter reported.

The department hosted a webinar this week to discuss programs like "Money Follows the Person," which helps eligible Medicaid enrollees shift to community care. Since 2007, the federally funded option has assisted more than 400 North Dakotans with disabilities. The recent settlement followed allegations the state relied too much on placing people in nursing facilities.

To meet future goals, Reuter asserted such issues as a better-trained workforce and affordable housing need to be addressed. He noted having flexibility to offer care in an integrated community setting gives affected individuals more choices in day-to-day life.

"They have meals when they want, how they want them," Reuter outlined. "They get to go out into the community, they spend time with the people they want."

Department leaders added as part of their response to past issues, they have tried to improve communications with key partners, like hospitals and nursing homes.

The Legislature has set aside more funding in this area, including use of American Rescue Plan aid.

In rankings compiled by the Case for Inclusion, North Dakota landed at 46th in the nation for policies such as promoting independence for people with disabilities.

Advocates for people with disabilities are urging the Massachusetts General Court to pass what is known as the Wheelchair Warranty bill, to improve the repair process for those who rely on wheelchairs.

Two large corporations provide most of the country's wheelchairs, and groups say the lack of competition leads to longer wait times for repairs. The bill would shorten the time manufacturers have to assess faulty chairs and offer loaners, and require them to keep adequate parts on hand.

Rich Levasseur, a power-chair user in Tewksbury, said people in wheelchairs often need to constantly reposition themselves so as not to exacerbate medical conditions.

"Long repair times mean worsening health conditions," Levasseur explained. "In my case, I can develop sores which can become infected and become pressure wounds."

The bill would extend the minimum warranty period to two years, and include what is called a "reasonable right to repair," meaning wheelchair users can attempt to make fixes themselves without voiding the warranty. Levasseur pointed to a time when a loose battery cable was causing his chair to start and stop intermittently, and said he could not have waited for the manufacturer.

Ellen Leigh, a power wheelchair user in Arlington, said it is not a recent supply chain issue. She pointed out whenever she has needed repairs -- from replacing tires to motors -- it has always taken months and included delays and mistakes. She pointed to simple repairs, such as replacing a bolt which fell out of her headrest. It took about three months to fix.

"In the meantime, I could not use this head/neck cushion," Leigh recounted. "This lack of support caused increased pain and fatigue. This wastes time and resources, and most importantly, leaves someone like me with a faulty or inoperable and potentially dangerous wheelchair."

Sen. John Cronin, D-Worcester, a sponsor of the bill, said it aims to level the playing field between wheelchair users and the companies controlling the supply: Numotion and National Seating and Mobility.

"It's important that our elected representatives hear the voices of people who have been overlooked and marginalized," Cronin contended. "That includes consumers who have little or no bargaining power or choice."

With only about a month left in the legislative session, advocates stressed the General Court needs to start advancing the bill. It is in the Senate Ways and Means Committee.

An effort born out of the pandemic to help members of Ohio's disability community is evolving into something much bigger.

Maria Matzik, education and advocacy specialist at the Access Center for Independent Living and host of the Breaking Silences Advocacy Committee, which started as a peer group offering a safe place for those struggling with the impact of the pandemic, explained they shared their challenges due to the lack of emergency preparedness for individuals with disabilities and formed an advocacy committee.

They are working to ensure people with disabilities can share their voice, their experiences and their recommendations when policies are being crafted on their behalf.

"To have a discussion and make decisions without us first of all is an insult," Matzik stressed. "And second of all, you could be wasting a lot of time, a lot of money by putting things in place that may in fact not work."

Along with several other advocacy organizations, the committee helped conduct an unmet needs survey in early 2021. A majority of respondents with disabilities expressed fear for their lives. For some, it was attributed to being high risk and disruptions in in-home caregivers. Roughly 70% said their ability to find necessary caregivers was affected by the pandemic.

Matzik explained the committee is focusing on the need for direct care support professionals, and speaking with lawmakers about how raising the minimum-wage floor for direct care workers to a livable wage could help better support the workforce.

"It's kind of a backdoor to saying, 'Folks need raises,' because raises aren't a long-term solution," Matzik pointed out. "But if you raise the minimum-wage floor, then that, in fact, will raise their wages and hopefully bring them to a comfortable wage that hospital and facilities are offering."

Other focuses for the committee include ensuring compliance with accommodations as mandated by the Americans with Disabilities Act and removing red tape creating barriers to securing food, shelter, health care and other basic needs. And Matzik encouraged Ohioans to get involved in advocacy efforts for the disability community.

"Everybody is going to face disability at some point in their life," Matzik noted. "The things that we do for our community affects everyone, with a disability or without. It will help them now, it will help them in the future."

One in four Ohio adults has some sort of functional disability; roughly 2.3 million people.

Graduation season is in full swing, and for those with disabilities transitioning to adulthood, traditional barriers still exist in securing employment.

Advocates in Iowa say entrepreneurship serves as a good solution. The Bureau of Labor Statistics said nearly 10% of workers with a disability are self-employed, which is higher than the general population.

Maureen Schletzbaum, operator of Straw Hat Farms outside Des Moines along with her daughter Marissa, who has Down syndrome, sells flowers and fresh produce. Maureen said their business was inspired after Marissa finished high school as a way to nurture their daughter's drive for independence in a rural setting with few opportunities.

"She has a lot of abilities, and as long as she has the correct support, she can really do a variety of things," Schletzbaum explained.

She pointed out Marissa excels in customer relations and attention to detail. The Iowa Development Disabilities Council urges young adults and their families to further explore their interests and carry them over into self-employment, especially if they encounter job-search challenges. Vocational Rehabilitation Services is considered a top resource in getting started.

Marissa, who learned horticulture through FFA, said she loves engaging with customers and explaining the varieties of produce they sell.

"Cucumbers, zucchini, cabbage," Marissa outlined.

Brooke Lovelace, executive director of the Iowa Developmental Disabilities Council, said while they still encourage business owners to be more inclusive in their hiring, entrepreneurship is a good avenue for those with disabilities to tap into their creativity and skill set.

"There's some examples of folks running their own coffee shop, or they like to bake, and so they're doing a small bakery," Lovelace stated.

She also encouraged residents to support the entrepreneurs by becoming regular customers.