En pocas semanas, los legisladores de Iowa regresarán para la the sesión legislativa de 2022. Los defensores de las personas con discapacidades dicen que hay formas de superar la naturaleza divisiva de la política y conectarse con éxito con los legisladores.

En Estherville, Brittney Funston es la madre de Joscelyn, una niña de 10 años que vive con parálisis cerebral, autismo y discapacidad intelectual. En los últimos años, Brittney se ha involucrado cada vez más en el mundo de la defensoría.

Ella dice que investigar temas es clave para aquellos que quieren ser defensores de la familia o autodefensores. Y ella dice que, si se asegura un tiempo cara a cara con un legislador, compartirle una breve historia personal es muy eficaz.

"No necesariamente pidiéndoles un si o un no, sino haciéndoles saber que hay personas en Iowa que confían en ellos," dice Funston.

Ella dice que compartir una foto puede ayudar, porque permite a los legisladores ponerle rostro a la situación.

Funston, miembro del Consejo de Discapacidades de Desarrollo en Iowa, dice que a través de su alcance, se tomaron decisiones políticas para acomodar mejor a las familias locales en el área de las rutas de autobús y la elección de escuelas.

Funston dice que en última instancia, los legisladores son personas que quieren escuchar sobre la experiencia de vida de los habitantes de Iowa como una forma de comprender mejor por lo que ellos o sus familiares están pasando.

"Puede que representen a una de las partes, o pueden oponerse a otras," dice Funston. "Pero al final del día, todos tienen familias, y todos tienen experiencias personales."

En cuanto a la investigación, dice que se puede ir más allá de leer los proyectos de ley que se encuentran en línea.

"Hay muchas juntas locales, municipales y regionales a las que definitivamente puedes unirte a sus reuniones," agrega Funston. "Muchas de ellas están abiertas al publico."

Ella dice que la recopilación de información puede resultar en que los legisladores estatales dependan de usted como fuente. El Consejo de Discapacidades del Desarrollo también ayuda a defensores a realizar un seguimiento de los desarrollos legislativos a través de boletines informativos y debates en línea.

En enero, se presentarán los proyectos de ley antes de que tome forma el debate. Las votaciones finales a menudo ocurren alrededor del comienzo de la primavera.

La escasez de cuidadores se encuentra entre los temas que los defensores esperan que sean debatidos en 2022.

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.