News

        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.

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.

Yesterday, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Housing and Urban Development (HUD) announced the launch of the Housing and Services Partnership Accelerator, which will support states in developing or expanding innovative housing-related supports and services for Medicaid-eligible people with disabilities and older adults who are experiencing, or at risk of, homelessness. As the name suggests, the Partnership Accelerator will focus on helping states improve collaboration and coordination between organizations and systems that provide services and resources that help people find — and keep — stable housing in the community.

The aging and disability networks have a critical role to play in this program, and we encourage you to reach out to your state Medicaid agency and other potential partners to explore options for your state’s application. Keep reading to learn more, and mark your calendar for an informational webinar on November 13! 

Helping States Leverage New Opportunities to Provide Housing-Related Services and Supports 

A growing number of states are leveraging new opportunities and flexibilities available under Medicaid, new federal housing resources, and expanded opportunities under the Older Americans Act to cover a range of services and supports that help people find, obtain, and maintain their housing. The Housing and Services Partnership Accelerator will bring interdisciplinary teams from four states together in a 12-month learning collaborative to tackle common issues, such as navigating payment models and rates, data integration and sharing, and more. The Accelerator also will offer participating states an opportunity to share lessons learned and promising practices for improving collaboration and coordination to optimize resources, cover resource gaps, align state and local policies, and to deliver more integrated and seamless services. States will also receive one-on-one coaching support from housing and services subject matter experts.

Eligibility and Application Information 

Participating teams will include state Medicaid agencies, as well as state and community organizations focused on homelessness and housing, aging and disability, substance abuse, public health, and more. To be eligible, states must have a (Centers for Medicare & Medicaid Services-approved) Section 1115 demonstration project or Section 1915(i) state plan home and community-based services benefit covering housing-related supports for people experiencing, or at risk of, homelessness. (Sections 1115 and 1915 of the Social Security Act authorize programs that test ways to deliver and pay for health care services in Medicaid and the Children’s Health Insurance Program.)

Letters of intent are due November 15, 2023 and final applications are due December 1, 2023. Instructions for both and links to the online forms can be found on the Accelerator webpage. 

Informational Webinar 

More details about this funding opportunity will be shared at an information session (via Zoom) on Monday, November 13, from 2:00-3:00 PM ET. Advance registration is required. Complete details also can be found in the program overviews. 

Brought to you by the Housing and Services Resource Center 

The Accelerator is offered through the Housing and Services Resource Center (HSRC). Operated in partnership by HHS, HUD, and the U.S. Department of Agriculture (USDA), the HSRC is improving access to affordable, accessible housing and the critical services that make community living possible. Many people with disabilities, older adults, and people experiencing homelessness need help obtaining housing that is both affordable and accessible. Many also need access to community-based supportive services — such as behavioral health services, personal care assistance, tenancy supports, accessible transportation, and home-delivered meals — in order to live successfully and stably in the community. Without housing and services that meet their needs, they often have no choice but to live in facilities, like nursing homes and homeless shelters, or on the streets. In every state and community, there are a number of entities and programs helping people access housing and supportive services, but the housing and service systems often are siloed. Stronger collaboration between these systems would enable states and communities to coordinate resources to help older adults, people with disabilities, and people experiencing homelessness achieve housing stability, live with dignity and independence in the community, and avoid homelessness and costly institutional care. The HSRC is supporting states in building that collaboration and coordination.

Within HHS, this partnership is led by the Administration for Community Living and includes the Centers for Medicare & Medicaid Services, the Substance Abuse and Mental Health Services Administration, the Administration for Children and Families, the Centers for Disease Control and Prevention (CDC), and the Office of the Assistant Secretary for Planning and Evaluation. The Health Resources and Services Administration also is supporting complementary efforts to fund technical assistance to states to support the development and implementation of sustainable financing of health and housing programs.

On October 31, 2023, the Justice Department announced that it has issued guidance to explain how the Americans with Disabilities Act (ADA) applies to state and local government’s employment and day services. The Justice Department’s Civil Rights Division has issued this guidance to help state and local governments understand their nondiscrimination obligations and people with disabilities understand their rights under the federal law in this area. The guidance provides an overview of the ADA, the ADA’s integration mandate, and the types of employment and day services that are often offered to people with disabilities. It then answers nine questions about how the ADA applies to those service systems.

The guidance may be found on ada.gov here. A Federal Register notice discussing the guidance will be forthcoming.  To learn more about the ADA, call the toll-free ADA Information Line at 1-800-514-0301 or 1-833-610-1264 (TTY), or access the Justice Department’s ADA website at ada.gov.

Meet 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. She has learned to advocate for herself, and she’s excited that the condition she has is being recognized understood more. We’re so fortunate to have on the Network!

What's your story?  Tell us a little bit about yourself.

This 52-year-old mom, grandma and wife has faced some challenges in life, but she’s determined to make the best of life.  Jen and her husband moved to Wisconsin from Illinois back in 2019.  She shares that in March of 2015, she started having tremors in her hands, feet and face.  The tremors quickly turned to whole-body seizures.  She went to almost all the top hospitals in Illinois looking for an answer.  She was told that she had Stiff Person's Syndrome, Essential Tremors and that she needed to be hypnotized because her "past life" was causing her seizures.  It wasn't until she had over 30 seizures in one day and was hospitalized at Northwestern Hospital that she received a true diagnosis.  She explains that her diagnosis is Functional Neurological Disorder (FND) and is a rare non-epileptic seizure disorder.  She went to Mayo Clinic in Rochester for a second opinion and they confirmed my disorder.  However, most doctors or neurologists didn't take this seriously. It was believed to be caused by trauma and wasn't very well known.  Often times, she would be accused of faking her seizures or that she was just out to get some meds.  

It wasn't until she moved to Wisconsin and became a patient at Monroe Clinic that she was finally taken seriously.  She tells us that her primary doctor and neurologist were familiar with FND and best of all, they believed her!  She decided that her goal was to become the best version of herself.  She started seeing a counselor, went to PT, OMT, Massage Therapy and a chiropractor to help her physical self become stronger.  She still knows seizures, but she’s now aware of what can set them off.  She knows what to do when she feels them coming on.  “Most of all, I don't hide from the public anymore,” she says. 

She and her husband own a wheelchair company in Juda.  They help people with disabilities all day, every day.  She can’t work a regular schedule, but she tries to help out at the office as much as possible.  

 How are you involved with self-determination? Why did you join the SD Network?

Jen has just joined the Self-Determination Network, but she’s excited to see what it’s about. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Some exciting news for Jen is that FND is now more recognized and doctors are taking it seriously.  “I have fought and fought for my own self and didn't take no for an answer,”  she tells us. 

What are some of your hobbies?

Before Jen was diagnosed with FND, her hobbies included playing and coaching volleyball.  She coached grade school and club volleyball.  It was her hope to one day be able to play with her sons.  Unfortunately, physical stress or emotional stress can cause her to have a seizure. “However, it is still my goal to one day return to the sport I love,” she shares. 

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.