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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.

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.

View guide

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

        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. 

Read more

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.

Read more

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.

Sleeping on a new mattress. Wearing new shoes. Switching your work schedule. Learning a new piece of technology. There are millions of things that people have to adjust to. Making adjustments is part of life. We make hundreds of adjustments every day. Most of the time, we don’t even realize we’re doing it. When was the last time you actually thought about pulling your shirt sleeve down? You don’t think about it; you just do it. Some adjustments take more time to get used to. Things such as getting a new vehicle or charging your daily routine may take longer to get used to. 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.

A few months ago, I did a journal entry about specific preferences. I want to be clear that, in my opinion, change and preference are two different things. Preferences are things that are unique to you. Change is something you have to do or face. Depending on the situation, change can be good or bad. It doesn’t matter what it is, when changes occur that affect us, we have to adjust. Adjustments may be physical, mental, emotional, spiritual, or a combination of these.

Recently, I had several seemingly minor adjustments done to my wheelchair. It’s only just over a year old, but, for whatever reason, I wasn’t sitting up straight and the seat belt was causing pressure sores on my hip. Of course, it took several months to figure out what needs to be done, get Medicaid approvals, and get the parts. As I explained in a previous entry, my wheelchair guy is great about working with me. Last week, he came to my apartment late one afternoon and did all the repairs. Admittedly, I wasn’t prepared for the big change. Honestly, I thought he was only going to fix some little things on the chair. I was wrong. He ended up spending over two hours at my place making all the adjustments. Thankfully, I had a shift during that time, so my worker helped me transfer in and out of the chair. He made all the adjustments and made sure it was right for my body. He left and I then realized what an adjustment it was going to be. Due to my spasticity, my muscles are very rigid. Once I find a comfortable and functional way to do something, my muscles don’t like when we change it. In fact, my spasticity kicks in and fights the position. In this case, I had a lateral (which holds me up straight) moved in a couple inches so that my body wouldn’t tilt to one side as much. Being more upright is great for my posture and looks better, but, let me tell you, my muscles don’t like it! I am having to try to figure out how to do everything in the new position. It’s very difficult and painful. It’s also frustrating because I want to be able to do everything like I used to. I’m trying to remember that it takes my body a long time to time to adjust. It will get easier in time. Changes like this are physically and mentally tough, but it needs to happen for my physical health.

I face adjustments every time I have a new caregiver. Yes, we train people the same way; however, everyone does things just a little different and that’s okay. Obviously, I ask people to it how I like it if it’s something important, but when someone does something that is minor a little different than others do, I usually just go with it. I understand that people have different ways of doing things.  I just have to get used to how each person does things. It’s a unique part of my life.

Another adjustment I frequently have to make is with my schedule. As I’ve explained in previous entries, I live a very scheduled life. Having to rely on the assistance from caregivers, I have no choice but to schedule everything from getting out of bed each morning, to eating and using the restroom, to getting back into bed each night. I have scheduled shifts, but often, due to the availability of caregivers, I have to adjust to different times than what I prefer. While this usually isn't a big deal, as silly as it sounds, I have to adjust the times and how much water I drink. As minute as it sounds, it’s an important adjustment I constantly have to make.

As I said, we make hundreds of adjustments every single day. While most of them may not have significant impact, some of them do. Everyone reacts to adjustments differently. Sometimes, it’s challenging to adjust to different things or situations, but that’s kind of what life is—we have to adjust to every circumstance as it comes!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

 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.