News

A recent survey found that people with disabilities continue to face challenges voting. People with disabilities had a 20 percent likelihood of having difficulties voting in-person, compared to 6 percent for people without a disability. With a mail-in ballot, the likelihood of difficulties voting for people with disabilities was 6 percent, compared with 1 percent of people without disabilities.

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As the planet warms scientists say natural disasters are becoming more destructive and more frequent, and the data shows certain communities are hit harder than others. Judy Woodruff reports from Florida on the disproportionate impact on people with disabilities as part of our series, "Disability Reframed."

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Self-Determination Network News:

November 2023

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

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.

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?

Stacy’s Journal

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.

Upcoming Events 

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

• Webinar: Caregiving Chronicles - Lived Experiences And Life Edits: November 15th, 12p.m. to 1:15p.m., Virtual
• Webinar: Expanding Home Accessibility Services: Strategies For Sustaining Cross-Sector Collaborations: November 16th, 1p.m. to 2p.m., Virtual
• Accessible Tech: Accessible Word Documents: November 16th, 1p.m. to 2:30p.m., Virtual
• Webinar: Accessible Hybrid Meetings: November 28th, 12p.m. to 1:30p.m., Virtual
• Webinar: Providing Decision-Making Support For Youth With I/DD Making Health Care Transitions: December 6th, 3p.m. to 4:30p.m., Virtual

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.

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.

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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.

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        Remembering Terry Lynch, a Wisconsin Self-Direction Pioneer         

                                                                           -Lynn Breedlove

Terry Lynch moved back to Wisconsin in the 1980s to help his elderly mom Leila stay in her own home. Long before the IRIS program, he worked with his mom’s county case manager in the Community Options Program to cobble together a homemade version of self-direction. He called it “The Campaign” to keep Leila out of the nursing home, in spite of her increasing mental and physical frailty. As her only child, he recruited friends, neighbors and home care workers to join The Campaign.

It worked. Leila’s workers became her family. Leila’s health declined and her dementia increased, but she never set foot in the nursing home. She had some medical crises, but Terry and Leila’s team consistently overcame them. At her memorial service, her home care workers sat in the family pew.

Terry took the lessons he learned from that experience and wrote an excellent book, But I Don’t Want Eldercare. He also supported families, IRIS consultants, and self-advocates to help make self-direction work in the lives of many older people and people with disabilities in Wisconsin and other states and countries. He was one of the founding Board members of In Control Wisconsin.

30 years later, Terry needed long-term care himself. Just like his mom, he wanted to keep living at home as long as possible (in the same house he had shared with Leila). He enrolled in IRIS and stayed at home until his long-term care needs outstripped the supports the system was able to provide in the midst of the workforce crisis. He spent 1.5 years in three different nursing homes until he passed away on September 10.

The Terry and Leila Story contains several important lessons, which reflect many of the core principles in Terry’s book. Here are some examples:

• “Tap into the Power of Community” (say Yes to friends and neighbors who offer to help – Terry and Leila did that a lot)
• “Be open to finding Allies among paid providers of services” (Terry and Leila developed close friendships with their paid caregivers - that positively impacted service quality and kept staff turnover low)
• “Age is Not a Diagnosis” (when the doctor told Terry that his mom was losing her balance “because she’s old”, he insisted on getting more tests to find the true cause, which turned out to be her medications)
• “Rehab is not only for the Young” (Terry advocated for aggressive physical therapy for his mom and later for himself, even as his physical abilities declined)
• “Preoccupation with Safety can be Risky” (Terry was willing to take some risks to stay in his own home – he considered that to be part of self-direction; if safety had been the highest priority, he would have had to move into a nursing home much earlier)

Terry and Leila live on, through the example of their tenacious determination to keep living at home as long as possible; due to Terry’s deep belief in the power of self-direction; and with the legacy of the practical and timeless wisdom contained in Terry’s book.

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. 

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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

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.

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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.