Advocates say Utah lacks skilled workers to provide home and community services for people with intellectual and developmental disabilities.
Lawmakers at the state and federal levels are debating measures to increase funding for public and private health care providers, but no action has been taken.
Utah lawmakers heard a report last week from state health officials, showing they have nearly 1,000 vacancies for disability care providers.
Nate Crippes, supervising attorney at the Utah Disability Law Center, said the lack of hiring limits access to care.
“There are about 6,000 people in those wards right now,” Crippes reported. “The state currently has a waiting list of 4,000 people. And if providers can’t find staff to provide the support these people need, that’s going to cause real problems.”
Crippes pointed out in recent years that there has been an effort to get people out of institutions to provide treatment. the Utah State Developmental Center provides direct care, but also partners with private groups for home and community services.
The average Utah salary for disability care workers is well below what many consider a “living wage.” Crippes argued that the industry cannot attract qualified personnel because their budgets are ultimately decided by the state legislature.
“People who provide services for people with intellectual and developmental disabilities in the home and community say the rates for these workers are really, really low,” Crippes said. “I think the average is around $11.50 an hour.”
The Utah Legislature’s Social Services Subcommittee heard comments last week on pending legislation to increase disability care spending by up to $40 million. Crippes pointed out that advocates hope Congress can pass a section of the blockade Building back better which allocates $150 billion to community care.
“It looks like there might be some interest in trying to do pieces of this legislation individually rather than as a whole,” Crippes noted. “I think that would make a huge difference that would certainly allow the state to potentially expand services or do more.”
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People with disabilities are often left out of conversations about disaster preparedness, and the recent Marshall fire has tested emergency officials in Colorado.
Curtis Garrett, disaster preparedness coordinator for the Atlantis community, said the Disability and Disaster Helpline has played a key role in connecting people to emergency services, in part because State leaders have included the disability community in their planning efforts.
“The state of Colorado as a whole is really moving forward and is seen as a leader in disaster preparedness and disability services,” Garrett explained.
Garrett pointed out that when temporary shelters and other facilities are not ready to meet the needs of all members of the community, people with disabilities can be separated from their neighbors and moved to nursing homes against their will. Anyone in need of assistance can call the hotline at 800-626-4959.
Sadie Martinez, Access and Functional Needs Coordinator for the Colorado Division of Homeland Security and Emergency Management, said his team had developed a framework for identifying real resource needs rather than labeling people as “special needs.” The acronym CMIST provides an easy-to-remember checklist to ensure that all communication, medical care, independence, security and transportation needs can be met in times of crisis.
“Do we have American Sign Language interpreters, or are we available to get them immediately? Martinez describes. “Someone who is using oxygen or needs access to their medication that didn’t come with them, how do we get them to this shelter?”
Garrett added that ensuring everyone can receive emergency messages and emergency alerts is critical, but too much media continues to neglect people with disabilities. For example, broadcasters routinely exclude sign language interpreters.
“My safety depends on hearing this message,” Garrett stressed. “It should be something they do, it’s planned. You have to plug in the microphone. Well, having the performer on screen should be just as important. It should be a no-brainer.”
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In a few weeks, Iowa lawmakers return to the 2022 legislative session. Disability advocates say there are ways to rise above the adversarial nature of politics and successfully connect with policy makers.
In Estherville, Brittney Funston is the mother of Joscelyn, a 10-year-old girl with cerebral palsy, autism and intellectual disability. In recent years, Brittney has become a family advocate for the Iowa Developmental Disabilities Council and has become increasingly involved with it.
She said researching topics is essential for those who want to be an advocate. And, she said, if you happen to hang out with a legislator, sharing a brief personal story is effective.
“Not necessarily asking for their yes or no on something, but letting them know that there are people in Iowa who are counting on them,” Funston said.
She said sharing a photo can help because it allows decision-makers to put a face to the situation.
Funston, a member of the Iowa Developmental Disabilities Council, said that through her outreach, policy decisions were made to better accommodate local families in the area of bus routes and school choice.
Funston said that at the end of the day, lawmakers are people who want to hear about the life experience of Iowans so they can better understand what they or their family members are going through.
“They can represent one party, you know, or they can be against another party,” Funston said. “But at the end of the day, you know, they all have families. Some, they all have personal experiences.”
As for research, she said she could go beyond reading proposed bills found online.
“There are a lot of local councils, city councils and regional councils that you can definitely join in their meetings,” Funston said. “You know, a lot of them are open to the public.”
She said gathering information can eventually cause state lawmakers to rely on you as a source. The Developmental Disabilities Council also helps advocates keep up with legislative developments through newsletters and online discussions.
In January, bills are tabled before the debate takes shape. Voting on the top floor often takes place around early spring.
Caregiver shortages are among the topics disability advocates expect to see debated in 2022.
Disclosure: The Developmental Disabilities Council of Iowa contributes to our fund for reports on disabilities, early childhood education, health issues, mental health. If you would like to help support news in the public interest, click here.
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ANNAPOLIS, Md. — Advocacy groups say a paid leave proposal in Maryland would bring peace of mind to workers, especially people with disabilities and their families.
the caring time act should be before the General Assembly when he returns in January. It would establish a statewide insurance program that would provide up to 12 weeks paid vacation.
Myles Hicks, executive director of the Maryland Rise Group, said it would help people deal with family health issues, care for themselves or a newborn baby, family member, or of a soldier.
“Nobody should have to choose between taking care of the family they love and going to work and getting paid,” Hicks said.
Opponents argue that most large private employers already offer paid leave and say the measure would be a burden on businesses. The legislation was introduced in the last session, but never went to committee.
Rachel London, executive director of the Maryland Developmental Disabilities Council, said the pandemic has made it clear that paid time off is essential for families facing health challenges.
“And for people with disabilities and their families, access to paid leave means more opportunity, more flexibility and increased financial resources,” London said.
The program would require a 50-50 split between employers and workers, with a weekly contribution estimated between $3 and $6.
Hicks explained that workers caring for a child or adult with a disability or health condition are at greater risk of losing income, and that people with disabilities are more likely to be employed in low-wage part-time jobs with fewer benefits.
“For those who live with a disability, those disabilities can arise unexpectedly,” Hicks explained. “You never know when you might have an unexpected flare-up or problem, so it’s really important that paid family leave benefits are available, just in case you run into an unexpected problem.”
the Building back betterrecently passed by the US House, guarantees four weeks of paid vacation.
London acknowledged that its future was uncertain.
“We don’t know what’s going to happen,” London said. “So it’s critical that states take the lead on this issue and show that workers matter and recognize the needs of people with disabilities and their families throughout Maryland.”
She added that most industrialized countries have a national paid vacation policy, as do nine states and the District of Columbia.
Disclosure: The Maryland Developmental Disabilities Council contributes to our fund for reporting on policy and budget priorities, civil rights, disabilities, and health issues. If you would like to help support news in the public interest, click here.
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Philippine Cerebral Palsy
