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Research

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CDC has launched a new four-year phase of funding for the Autism and Developmental Disabilities Monitoring (ADDM) Network, the only collaborative network to track the number and characteristics of children with autism spectrum disorder (ASD) and other developmental disabilities in multiple communities throughout the United States. Over the next four years, CDC will invest more than $20 million to continue tracking at nine sites previously included in the ADDM Network, while also launching activities at one new site.

All 10 sites will track ASD among 4-year-old and 8-year-old children. Four of the sites will also track transition planning and co-occurring conditions among 16-year-old children with ASD. In addition to the 10 funded sites, our CDC-managed site in Georgia, the Metropolitan Developmental Disabilities Surveillance Program (MADDSP), will also conduct ASD surveillance activities among 4-, 8-, and 16-year-old children.

Read more about the ADDM Network sites.

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The Department of Health and Human Services (HHS) released a new report that highlights patients’ experience of Long COVID to better understand its complexities and drive creative responses by government leaders, clinicians, patient advocates, and others. The Health+ Long COVID Report builds on President Biden’s Memorandum on Addressing the Long-Term Effects of COVID-⁠19 and the two previously issued HHS Long COVID reports. The report was commissioned by HHS and produced by Coforma, an independent third-party design and research agency. It provides recommendations on how to deliver high-quality care and relevant and intentional resources and supports to individuals and families impacted by Long COVID.

Last week, the Administration sent a $750 million dollar supplemental funding request to Congress to support Long COVID research and treatment. This funding request would support HHS and their continued work on Long COVID, providers who serve patients with Long COVID and its associated conditions, and community-based organizations that assist with case management and provide other essential services and supports.

The report offers a variety of short-term and longer-term recommendations that come directly from the patient experience.

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Thursday, October 20 — 1:00 pm to 3:00 pm
REGISTER

Trauma comes in many forms. Research suggests that individuals with disabilities are two to ten times more likely to experience a traumatic event than the general population. The barriers individuals face related to trauma include increased risk of abuse and a lack of follow through when traumatic events are reports. This session will help to define trauma, inform providers on how to create a trauma-informed practice, and give an overview of empirically-supported trauma interventions from childhood through adulthood.

Presenter: Nicholas DeMarco, Ph.D. Director of ID Mental Health Supports, PMHCC, Inc.
Dr. DeMarco is an experienced behavioral health leader with a demonstrated history of working in the hospital & health care industry. His training was from the Philadelphia College of Osteopathic Medicine.

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The National Alliance for Direct Support Professionals (NADSP) shared this report:

Direct Support Workforce and COVID-19 National Report: 12-Month Follow-up

READ REPORT

While vaccination rates have improved among professionals supporting people with intellectual and developmental disabilities since the early days of the COVID-19 pandemic, their mental and physical health have declined, a new survey shows.

The Institute on Community Integration, in partnership with the National Alliance for Direct Support Professionals (NADSP), surveyed 2,657 DSPs and frontline supervisors about their experiences supporting people with IDD during the pandemic. The newly released survey report is a 24-month follow-up to an initial report issued in April 2020. Additional surveys were conducted six and twelve months after the initial report. The survey series represents the largest-ever national study of the DSP workforce.

According to the report, 52% percent of DSPs reported being diagnosed with COVID-19, and 6% were not diagnosed but suspected they had it. Among employers, 65% did not require DSPs to be vaccinated.

Sixteen percent of DSPs remain unvaccinated. Of the 84% who are vaccinated, 67% reported having at least one booster shot.

While vaccination rates have improved from the 12-month survey in 2021 (from 72% to 86%), the mental wellbeing of DSPs has declined. Forty percent of DSPs reported experiencing depression, compared with 36% one year ago; 43% had difficulty sleeping, a 13% increase; and 56% reported increased anxiety, a 14% increase. Fifty-nine percent of respondents said they felt pressure to work extra hours.

“Direct support professionals and frontline supervisors have worked as hard as they can,” said Amy Hewitt, ICI director and lead investigator of the study. “This survey shows that their mental health is worsening, and we don’t have the resources to address it. Working this much overtime is not sustainable.”

A national plan to increase the size of the direct support workforce would help to alleviate multiple troubling issues, Hewitt said.

“This workforce has been overlooked and in crisis for years, with high turnover and vacancy rates, low wages, and lack of access to affordable benefits,” she said.

More than half of DSPs receive government-funded assistance, such as housing, energy, food, and healthcare. The pandemic made staffing even more difficult, increasing stress, expectations, and risk on those who remain in their positions.

The 24-month follow-up survey also looked at changes in technology use during the pandemic. Fifty-nine percent of DSPs reported using technology more or a lot more than before the pandemic. Thirty-six percent of the respondents said the use of technology had a somewhat positive impact on their work, and 14% reported it had a very positive impact. Seventeen percent reported a somewhat negative impact and 3% a very negative impact.

Read the full report, a short version, and select state-specific versions here.

Please contact Jerry Smith with questions.

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