UNICEF highlights digital inclusion for girls with disabilities; Aging parents struggle with next steps; CT report finds gaps in accountability
News roundup for the week of Dec. 3
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Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the Washington State Standard: “Ache of uncertainty: Aging parents caring for disabled adult children worry what’s next”
Eighty-six-year-old Helga Teske thinks a lot these days about all the things she still wants to teach her son.
How to clean the two-bedroom house where they’ve lived for 45 years. How to take care of her garden, an 80-by-225-foot plot that she tends most days. How to cook – oats for breakfast, foods like chicken and rigatoni, vegetable stew and snapper for dinner. Which newspapers to read to stay up to date on current events.
Helga has been the sole caretaker for Julian, her 50-year-old son with developmental disabilities, almost his entire life.
But many birthdays and a few health scares later, Helga, originally from Germany and divorced, is looking at other care options for him. And like many aging parents caring full time for their adult children, finding a caregiver both she and her son are comfortable with is not easy.
As of June 2022, Washington had almost 10,800 people over the age of 40 who were eligible to receive care through state Developmental Disabilities Administration programs. More than one in five of these people still received support from a parent, according to the agency. About 150 of those parents, like Helga, are over the age of 60.
“I have to be the strong one,” Helga said. Though she often finds herself asking: “What am I going to do?”
[…]For aging parents who are caregivers, it presents a heavy question: Who will look after their child once they are no longer able to?
“Something’s going to have to happen because a lot of us are going to be dying at the same time,” said 66-year-old Melissah Watts, who is the sole caregiver for her 38-year-old son Max, who has developmental disabilities.
Some look to other family members to step in. Some opt for group homes. Some hope that they will outlive their children so they can know that their son or daughter will always have care.
[…]Seaman said the most important thing for families is that they are planning ahead.
But even though Washington is ahead of other states when it comes to caregiving support, resources are limited. It has been particularly difficult to retain residential care staff coming out of the pandemic, Seaman said.
Supported living facilities, group homes and state-operating living alternatives, which give people a path to live in private residences with up to three housemates, all saw spikes in staff turnover in 2021, according to data from the Developmental Disabilities Administration.
[…]For disabled adults who are able to live more independently, money can be an obstacle.
The only form of income for many people with intellectual and developmental disabilities is often Supplemental Security Income payments, which will be $943 a month in 2024.
A December report from the Department of Social and Health Services estimated that more than 37,000 adults with intellectual and developmental disabilities in Washington are facing housing insecurity.
The Legislature this year increased funding to build housing specifically for people with disabilities. And there are some new projects getting underway. For instance, Parkview Services, a nonprofit that specializes in housing for people with developmental disabilities, announced Monday that they were on track to complete seven new homes that will house 35 adults by the end of 2024. But the added money and new development only go so far in meeting the needs of a growing population.
[…]Helga wants her successor to be properly trained to care for people with the physical and psychological needs that Julian has. But they also need to be patient, empathetic and have a sense of humor, the two decided.
For now, Helga sees just one option. “I need to keep going,” she said. “I’m not finished yet.”
Girls and young women with disabilities face more barriers to digital inclusion compared to their peers, as the gender gap in digital adoption is amplified at the intersection with disability. Women and girls with disabilities are less likely to use a mobile phone or smartphone, because of challenges in digital access, accessibility, and usability. In addition, they generally have fewer opportunities to develop digital knowledge and skills and are less likely to understand mobile devices, their benefits, and how to use phone accessibility features.
[…]People with disabilities should be engaged in every phase of digital solution development. However, in many countries, girls (and boys) with disabilities are often invisible – they may be at home, live in institutions, and not participate in school or social activities.
[…]Ensure information is accessible and uses appropriate, respectful, inclusive, and contextual language to describe disability and individuals with disabilities.
Using the right terminology in written and oral communications can empower people with disabilities; using outdated and inappropriate terms will reinforce prejudice and discrimination.
[…]Consultations should be empowering, safe, and respectful,
featuring meaningful dialogue, rather than being tokenistic. If well implemented this engagement can give girls with disabilities a voice, make them feel valued and increase their self-confidence.
[…]Case study: Oky accessibility and digital inclusion of girls
Disability experts were engaged to support the Oky app to be accessible and inclusive. To comply with WCAG standards, button labels and alternative text for images were included. A tablet landscape version of the app was developed to allow enlarged screen content, easier navigation for children with limited upper body mobility and use on wheelchair mounted tablets. Avatars were developed to ensure representation of girls with disabilities, and specific content was created for girls and their caregivers e.g., how to manage periods if you are visually impaired, and how to support a girl with an intellectual disability during her menstruation.[…]
• From Connecticut Inside Investigator: “Child Advocate finds lack of state agency response to critical incidents”
The Office of the Child Advocate (OCA) released a report regarding a serious incident that occurred in a group home for the intellectually disabled on Monday and found that previous incidents had gone unreported by the community living arrangement (CLA) and that state agencies lacked timely follow-ups to correct the issues.
The incident involved a developmentally disabled adolescent under supervision by the Department of Children and Families (DCF) committed to a facility contracted by the Department of Developmental Services (DDS), who “was found attempting to compel sexual intercourse” with an intellectually disabled young woman during a time they were both unsupervised. The boy had a “history of sexually reactive behaviors,” according to the report.
The incident was reported by first responders and led to both DCF and DDS findings of “individual and programmatic neglect,” according to the report.
“OCA found that while efforts have been made to support the care of developmentally disabled children and adults in state-licensed settings, grave concerns persist regarding resources and oversight to ensure safe and high-quality care for these individuals,” Child Advocate Sarah Eagan wrote. “Significant concern also remains regarding the adequacy of resources to support non-profit providers’ recruitment and retention of staff who care for individuals with disabilities in community settings.”
[…]“To us, and many Connecticut residents, our state’s most-recent failings in helping at-risk children are tragically clear, and we fear these cases, including the recent Short Term Assessment & Respite (STAR) home issue in Harwinton, are emblematic of government’s intervention into the lives of vulnerable children who need our help,” [Republican House Leader Vincent] Candelora and [Senate Republican Leader Kevin] Kelly wrote on October 27.
DDS responded to the OCA’s report, indicating they have hired three regional directors of quality assurance and a program manager for critical incidents, to address the concerns raised in the report. DCF wrote that it “is currently assessing the scope of the child abuse and neglect investigations it conducts in DDS-licensed facilities to determine whether these can or should continue to include program concerns not directly related to the abuse or neglect investigation,” and that it will continue to offer staff training on serving children with developmental disabilities.[…]
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