New rules aimed to ease air travel for people with disabilities will go into effect on January 18th. The rules make it clear that all wheelchairs and mobility devices must be returned to passengers in the same condition received, and that any damage to the equipment or delay in returning it will be considered a violation of the Air Carrier Access Access. This will make it easier for the Department of Transportation to track and hold airlines responsible.

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A new survey highlighted the challenges facing America’s direct support workforce, revealing a care system in crisis due to ongoing recruitment and retention issues. The State of America’s Direct Workforce Crisis 2024 survey found that 90% of providers faced moderate to severe staffing issues in the past year, leading to 69% turning away new referrals. These challenges have negatively impacted the access to services for individuals needing care. 

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This study’s aim was to examine how states across the United States implemented self-direction in their Medicaid home and community‐based services (HCBS) 1915(c) waiver programs for people with intellectual and developmental disabilities (IDD) in fiscal year (FY) 2021. Eighty percent of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13 percent of people with IDD receiving HCBS self-direct. In FY2021, 29 percent of services could be self-directed and 36 percent of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9 percent to 47.5 percent of people with IDD receiving HCBS. Projected spending for services eligible for self-direction varied by state from 0.1 percent to 100 percent. 

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Self-Determination Network News:

December 2024

Connect | Share |Learn | http://sdnetworkwi.org

We absolutely loved seeing and meeting so many of you at the Self-Determination Conference at the end of October. We want to thank everyone who participated in the Stewing with Stacy raffle, and we welcome all the new members who joined the Network! It was a great Conference again this year!  How did you like it? There were a ton of great sessions and events.  This year’s theme was A Seat At The Table: Nothing About Us, Without Us! What was your favorite part? What resources did you find particularly helpful? Did something really inspire you? Let's keep the conversation going! Share your comments, questions, and ideas here.

The session recordings and materials from the 2024 Self-Determination Conference are now available online! If you weren't able to make it this year, save the date for 2025 and join us October 20-22, 2025!

For the first time since the IRIS Program started in 2008, a group of IRIS participants, families, self-direction advocates and other stakeholders spent a day together in November 2023 to discuss what is working well in IRIS and what could be improved. In addition, the group identified a number of recommendations for how to achieve improvements in the program. A public report summarizing the consensus from that gathering has now been released and submitted to the Wisconsin Department of Human Services, along with a proposal to create a broad-based task force to work through the issues and recommendations. Read the full report.

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

In November, we shined the spotlight on Peter. This avid Wisconsin sports enthusiast loves connecting with others and hearing them share their story.  Check out this month's Member Spotlight to get to know Peter.

For December, we're shining the spotlight on Katrina. This video game obsessed self-advocate is the coordinator of the Self Advocacy Action committee at the University of Minnesota-Twin Cities Institute on Community Integration. Stop by this month's Member Spotlight to get to know Katrina.    

Who should we shine the spotlight on next?

Stacy’s Journal

Take five minutes to check out what's happening on the Self-Determination Network:

• Advancing Independence and Community Integration for All: The President’s Committee for People with Intellectual Disabilities (PCPID) has prioritized high-quality home and community-based services for their report to the president with a focus on four key areas: direct support professionals, employment, community living, and federal support. Read the report.
• Fear of Losing Benefits: Fear of losing Medicaid benefits is a factor in debates over law allowing certain workers with disabilities to be paid lower than minimum wage — advocates urge Wisconsin lawmakers to pursue expansion. Learn why.
• Direct Care Wages Factsheet: This factsheet presents an analysis of wage disparities between direct care workers and similar occupations across the United States in 2023, as well as trends in this wage gap from 2014 to 2023. Take a look at it.
• Increase in Employment: Federal data shows that the number of people with disabilities finding employment is increasing. Find out what advocates credit the rise to.
• The Sandwich Gap: There’s a growing number of us who are Millennials or Generation X and struggle to balance the obligations of parenting school-age children, caring for elderly loved ones, and working for a living. Read about what a recent study found.
• Airline Fined over Treatment of Passengers with Disabilities:  One airline has agreed to a record $50 million settlement with the U.S. Department of Transportation for violating laws that protect airline passengers with disabilities. Find out what else they are accused of.
• Experiences of Direct Care Workers and Family Caregivers: This brief includes findings from focus groups with direct care workers and family caregivers who provide home-and-community-based services. Learn what the groups found.
• Who Are the Direct Care Workers?: This analysis provides an overview of demographic information, wages, and health care coverage of direct care workers. Find out what this analysis found.
• Sponsor and Exhibitor Registration Open: Registration for sponsors and exhibitors for the Circles of Life Conference is now open. Early bird registration ends in February!
• Myths of Self-Directed Care: Enrollment and awareness of self-directed care remain low. Read about some of the myths.
• Workforce Shortages Top the List: State legislatures passed over 3,000 health policy bills in 2024, focusing on healthcare workforce shortages, Medicaid changes, and youth mental health. Learn what key actions include.
• Caregiver Impact Report: This report lists hundreds of actions that federal agencies, state and local governments, businesses, and communities that can be taken to improve caregivers' lives.. Learn what five goals the strategy includes.

Upcoming Events 

Here's a sample of upcoming events listed on the Self-Determination Network:

• Webinar: From Standards to Support: Understanding the Access Board’s Role in Accessibility: January 9th, 1:30p.m. to 3p.m., Virtual
• Disability Advocacy Day 2025: March 12th, Monona Terrace and State Capitol, Madison WI
• National Symposium on Quality Employment 2025: May 20th-22nd, Memorial Union, Madison WI 

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.