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Self-Determination Network News:

November 2023

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National Family Caregiver Month

November is National Family Caregiver Month. We know that many people are caregivers for family members and we thank you. Legislators need to hear your story. We encourage you to contact your legislators and share your experience. The Survival Coalition put together a fact sheet that you can use when you do so. 

Remembering Terry Lynch, a Wisconsin Self-Direction Pioneer

Terry Lynch, one of the earliest pre-IRIS self-direction practitioners and activists in Wisconsin, passed away on September 10. He was one of the founders of In Control Wisconsin and the author of But I Don’t Want Eldercare. Terry was a trainer, speaker and consultant on self-direction and workforce issues. To read Lynn Breedlove’s reflections on Terry’s contributions to the self-direction movement and the lessons we can learn from his book and his life, click here.

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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.

This month, we shined the spotlight on Jen. This volleyball fanatic has faced some challenges which have kept her off the court in recent years, but she has a goal of playing again one day. Check out this month's Member Spotlight to get to know Jen.   

Who should we shine the spotlight on next?

128 Stacy’s Journal




"People have various reactions to change. Some people have no problem adjusting to change; while others have a difficult time. Like everyone else, people with disabilities have various reactions to change. Generally speaking, many of us are so routine based, so often we have a hard time adjusting to change."



In this month's entry, Stacy discusses how simple adjustments can be life-changing for some people. She talks about how people react to adjustments differently. Do you react to change well or do you have a hard time adjusting.




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

  • Celebrating 25 Years of ADRCs: The Wisconsin Department of Health Services is celebrating the 25th anniversary of aging and disability resource centers (ADRCs) helping older adults and people with disabilities in our state to thrive. Learn about what ADRCs do.
  • Inclusive TV: Read about how one television network is making strides in including performers who have disabilities.
  • Disability Employment: As Disability Employment Awareness Month came to an end in October, it's obvious that most people with disabilities want to work, but there are many different barriers that make it challenging. Learn about some of the problems people are facing.
  • Wisconsin Wayfinder: The Wisconsin Department of Health Services launched a new service that will transform the support structure for families of children with delays, disabilities, special health care needs, or mental health conditions.  Find out how it works.
  • 60th Anniversary of the DD Act:  In late October, we celebrated the 60th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act. Find out what this act does.
  • Sheltered Workshops Violation: According to the Justice Department, segregating people with disabilities in employment and other day programs may violate their rights under the Americans with Disabilities Act.  Learn why.
  • Proclamation: Read the proclamation from the White House for National Family Caregiver Month.
  • New Accessibility Features in Google Maps: Google recently released many new accessibility features to make it easier for people with disabilities. Find out what these include.
  • Medicaid Transportation Guide: CMS recently released a Medicaid Transportation Coverage Guide, which highlights existing policies and includes new policies to address issues such as extended wait times and long-distance trips. Check out this great resource.

128 Upcoming Events 

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

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. 

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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.

CMS recently released a Medicaid Transportation Coverage Guide, which highlights existing policies and includes new policies to address issues such as extended wait times and long-distance trips. It also addresses coverage of transportation for non-Medicaid eligible parents, family members, or other caregivers when required to participate in a Medicaid eligible child’s care.

Medicaid transportation is a critical service that assists beneficiaries with accessing covered Medicaid services and has a direct impact on health outcomes. This guide will help states understand the federal requirements for this service and flexibilities they can implement.

View guide

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Google recently released many new accessibility features to make it easier for people with disabilities. Google Maps now offers wheelchair accessible walking routes. This will generate a route with no stairs.Another new feature uses artificial intelligence and augmented reality to help people orient themselves in new places. This will be useful to those who have vision impairments.

Read more

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U.S. Senator Bob Casey, chairman of the Senate Special Committee on Aging, has introduced the Home and Community-Based Service Relief Act to provide support to state programs that fund home- and community-based long-term care services.  The bill would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers and meet the long-term service and support needs of people eligible for Medicaid home- and community-based services. 

Read more

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November is National Family Caregivers Month. It's a month to recognize and thank family caregivers for all they do.

Read the proclamation from the White House

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According to the Justice Department, segregating people with disabilities in employment and other day programs may violate their rights under the Americans with Disabilities Act. The U.S. Department of Justice is outlining how the ADA’s “integration mandate” applies to many daytime activities for people with disabilities.

Read more

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From Jill Jacobs, Commissioner of ACL’s Administration on Disabilities:

October 31st marked 60 years since President John F. Kennedy signed the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). The DD Act advanced a fundamentally different vision of what it means to live with a developmental disability. The law empowered people with developmental disabilities and their families to help shape policies that impact them, and it served as the blueprint for many subsequent laws that both protect the rights of people with disabilities and promote independence, integration, and inclusion throughout life.

Much of the progress to advance disability rights since the passing of the DD Act was made because people with disabilities worked together to advocate for themselves. In fact, many activities throughout the DD network are focused on training and supporting the next generation of disability rights advocates. ACL is committed to engaging with grassroots advocates and collaborating with our stakeholders in pursuit of our common goal of independence for all people with disabilities. We look forward to seeing more progress in ensuring disability rights in the next 60 years.
 
Please read the statement from ACL’s DD network partners:

The National Association of Councils on Developmental Disabilities (NACDD), the National Disability Rights Network (NDRN), and the Association of University Centers on Disabilities (AUCD) honor the 60th Anniversary of the Developmental Disabilities Assistance and Bill of Rights (DD) Act.

The DD Act established the DD Network, which includes State Councils on Developmental Disabilities; University Centers for Excellence in Developmental Disabilities Education, Research, and Services (UCEDDs); and Protection & Advocacy Systems (P&As). These entities work to identify and solve issues that individuals with developmental disabilities face in their communities. The three DD Act programs provide training and technical assistance to policymakers, and work to remove barriers that prevent individuals with developmental disabilities from having their voices heard. The 56 Councils, 57 P&As, and 67 UCEDDs across the United States also work with local, state, and federal governments to develop robust policy solutions aimed at empowering these individuals and promoting self-determination. 


Read the full statement on the NACDD website.

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 Connecting Wisconsin families with special health care needs to essential support and resources


The Wisconsin Department of Health Services (DHS) today launched a new service that will transform the support structure for families of children with delays, disabilities, special health care needs, or mental health conditions. Wisconsin Wayfinder: Children’s Resource Network includes a user-friendly website and toll-free helpline that lets families easily connect with real people – dedicated children’s resource guides – who will help navigate through the essential services and supports that will enable their children to thrive.

“This service is a critical step toward improving the way families with special health care needs access and connect with the vital resources they need, especially during crucial moments like after an initial diagnosis,” said DHS Deputy Secretary Deb Standridge. “Our children’s resource guides are people committed to personally assisting families on this journey. Wisconsin Wayfinder embodies our commitment to inclusivity, support, and accessibility for our state’s children and their families.”

A statewide, user-friendly website, dhs.wi.gov/wiscway, and toll-free number, 877-WiscWay (877-947-2929), provide families with convenient, direct access to compassionate and knowledgeable children’s resource guides.

View the entire news release.

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