HELENA, Mont. -- Families with people who have disabilities can sometimes feel isolated because of their experiences.
Siblings of people with physical, developmental or mental-health diagnoses especially have unique experiences, which include challenges and rewards.
Abbey Guza, a licensed clinical social worker who hosts "SibShops," which provide support for Montana families who have a child with a disability, said siblings sometimes feel as if some of their parents' attention is pulled away from them, but ultimately they're resilient.
"They're really proud of their ability to help that brother or sister out," Guza observed. "And I see a lot of kids who have a really incredible amount of knowledge, often times well beyond their years, about what their sibling with a disability needs."
Guza noted families can feel alienated and are even more isolated than usual because of COVID-19.
While her SibShops can't happen in person, Guza will host three virtual sessions with families over the next month, starting with a session for parents and caregivers on Feb. 22.
Grace Lee Banna, whose older sister has a neurodevelopmental disability that has slowed her capacity for picking up new skills, said there are ups and downs with her sister.
"I've learned to be more willing to help even though at first I did not want to help at all," Banna acknowledged. "But the other half of it is honestly kind of fun to be able to try new things with her and be able to teach others about her, like my friends or anyone that comes across her."
Jen Banna, Grace Lee's mother, is coordinator for the Montana Family to Family Health Information Center, based at the Rural Institute for Inclusive Communities, which helps families navigate health care and also help providers, state agencies and lawmakers understand the needs of families who have children with special needs.
"We believe that the health of the family, including the mental health, is improved when we provide resources that help families cope better with the special conditions that their kids have," Banna explained.
The deadline to register for Guza's SibShop, which is hosted by the Montana Family to Family Health Information Center, is Monday.
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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.
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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.
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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.
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