WATERLOO, IOWA -- Los defensores de los habitantes de Iowa con discapacidades están sonando las alarmas sobre lo que describen como una crisis de cuidadores. Están suplicando a los legisladores que den más prioridad al tema, para que los pacientes no se vean obligados a abandonar sus hogares debido a la limitación de proveedores.

La escasez de mano de obra se ha estado acumulando durante años, dice Tucker Cassidy, una persona con cuadriplejía de Waterloo. Pero en el último mes y medio, ha empeorado mucho. Dice que es difícil para la agencia con la que trabaja enviar suficientes cuidadores para que lo ayuden con su rutina diaria. Atrapado en la cama más de lo que estaba acostumbrado, Cassidy dice que la escasez lo deja preocupado por su futuro.

"¿Será esta la semana en la que me expulsen? Y luego, ¿a dónde se supone que debo ir? Sabes, soy dueño de mi propia casa", agregó además Cassidy.

Los defensores dicen que la crisis se debe en gran medida a los bajos salarios de los cuidadores. Según Indeed.com, el salario inicial promedio para los cuidadores a domicilio en Iowa es de alrededor de $13 la hora.

Servicios Luteranos en Iowa estima que se ha visto obligado a reducir su base de clientes en 350 en los últimos años. La escasez se produce cuando Iowa pregona un superávit presupuestario de $1,250 millones.

Matt Grillot de DeWitt ha usado una silla de ruedas la mayor parte de su vida debido a una lesión en la columna. Durante los últimos 18 años ha estado en su propia casa. Pero ha tenido problemas para contratar a un cuidador en los últimos meses, lo que lo obligó a considerar alternativas que preferiría evitar.

"Me dejé vencer en el último mes y comencé a buscar hogares de ancianos y casas grupales", confesó Grillot. Pero dice que enfrenta barreras para mudarse a esos lugares, lo que aumenta su estrés al planificar su cuidado.

Cody Lewton dirige el programa de apoyo estatal de Servicios Luteranos para personas con discapacidades. Dice que han perdido aproximadamente 250 cuidadores, citando la lucha por pagarles dinero suficiente.

"Es menos que un salario digno y solo ha empeorado. La financiación, en realidad, durante los últimos 20 años, no se ha mantenido al día con el costo de vida", comentó también Lewton de Servicios Luteranos.

El Consejo de Discapacidades del Desarrollo de Iowa dice que también está preocupado por la crisis, y agregó que será la prioridad legislativa número uno del grupo en la próxima sesión.

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.