Welcome to "ADA Live!"

Meet Allison.  Between writing her dissertation and volunteering on many boards, she works as a Program Manager. She believes self-determination goes beyond self-direction and that it’s important that people understand that you don’t have to do it alone.  We’re so fortunate to have her as a member of the Network.   

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

Allison has worked on a number of projects related to self-determination in her career. As an adult with a disability, she really values the importance of the discussing what self-determination looks like, and how to continue to advance it is a principle in services and supports.  She currently is the Program Manager for the Northern Regional Children and Youth with Special Health Care Needs Center.

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

Allison is working on her dissertation for a PhD in Human Services.  Her research is focused on social capital and people with disabilities within the context of community development and employment.  Social Capital and Self-Determination are very interlinked.  She created this document for the Self-Determination Conference explaining how they’re link.

She’s also very excited about seeing Support Decision Making becoming a reality.   She explains that she was recently at a meeting where county APS staff outlined what they are doing to implement the law.  “Living in Wausau and working across the Northwoods, I appreciate see a large policy change trickle down to the masses,” she says. 

What tip or resource would you like to share with people who want to be more self-determined?

Allison believes that self-determination goes beyond self-direction and sometimes within the service system there is a not a framework for what that looks like. “Just as we use the term independence to not mean that you should not be connected with others, self-determination does not mean you have to do it alone,” she explains.

What message would you like to share with the members of the SD Network?

Allison stresses that self-determination, like many aspects of disability, is ever evolving and it is important to assess and re-evaluate the way we frame things. She feels that the current discussion regarding person first and identity first language is a good example of the need for ongoing dialogue.

 What are some of your hobbies?

Allison keeps pretty busy working on her dissertation.  In her spare time, she really enjoys going to Farmers’ Markets—she loves the sense of community they have. She enjoys cooking and baking--especially as it gets colder. She volunteers on a variety of boards and committees and nationally lead the Employment Committee for LPA (the national organization for short stature) as well. 

***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.

Dan Johnson changed the landscape for people with disabilities in Wisconsin. Dan was a man of great strength with an unwavering commitment to full inclusion in all aspects of life for people with disabilities. As a person with a disability, he had a keen, first-person insight into the nature of barriers confronting people with disabilities and helped develop strategies to reduce them. Dan developed services in the private sector and influenced disability-related public policy that created equality and opportunity for all citizens in Wisconsin. While Dan lived most of his life with a disability, the full measure of who he was as a person was so much more. Dan was a superb husband, father, and grandfather. A role that brought him so much pure joy. He was affable and accessible. He was a model of human kindness, patience and forbearance.

Nomination forms are available at: https://gcpd.wisconsin.gov/index.htm.

Please email completed nomination forms for consideration by GCPD to: Sara.ODonnell@dhs.wisconsin.gov.

Best Regards,

Lisa

Lisa Sobczyk

Supervisor

Office for Physical Disabilities and Independent Living

Bureau of Aging and Disability Resources

Wisconsin Department of Health Services

Phone: 608-266-9354

E-mail: Lisa.Sobczyk@dhs.wisconsin.gov 

Many people with disabilities have some unique challenges when emergency situations arise.  First responders in the La Crosse area are learning how they can better help people with different abilities.  They're learning things such as giving people space and redirecting the conversation can be very important in critical situations.  Firefighters were first to take the course, but they're hoping to expand the program in the future.

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Proposals due by February 22, 2019

Staff from the DHS Division of Care and Treatment Services serve on the planning committee for the annual Mental Health and Substance Use Recovery Training Conference organized by UW-Stevens Point. The 2019 conference is October 29-30 at the Kalahari Resort and Convention Center in the Wisconsin Dells. 

More than 900 people attend this event. The audience includes mental health, substance use, and trauma prevention, treatment, and recovery professionals. People in recovery from mental illness, substance use, and trauma also attend this event. 

Wanted: 90-minute workshops

You are invited to share your expertise with this audience. Workshops at this event support recovery; demonstrate evidence-based practices, enhance the skills of the audience; promote strength-based approaches, and highlight the voice of lived experience of mental health and substance use. To be considered as a presenter, complete and submit this short form. Multi-presenter proposals are allowed. Proposals are due by February 22, 2019. 

All proposals will be reviewed by the conference planning committee. The presenters of selected workshops will be notified by email no later than May 31, 2019.

All workshop presenters receive complimentary conference registration and one night of lodging. Additional compensation must be approved by UW-Stevens Point.

Wisconsin Senator Tammy Baldwin recently worked to include a number of key measures from her Air Carrier Access Amendments Act in the FAA Reauthorization Act of 2018 to protect the rights of airplane passengers with disabilities and close service gaps that passengers frequently encounter in air travel. The reforms included in the legislation passed the House and the Senate and now head to the President for his signature.

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The National Council on Disability (NCD) has released a report on the enforcement of federal disability laws by various federal agencies. The report, "Has the Promise Been Kept? Federal Enforcement of Disability Rights Laws," assesses the progress made by the Access Board, the Equal Employment Opportunity Commission (EEOC) and the Department of Labor in implementation and enforcement activities concerning the Architectural Barriers Act, (ABA), the Americans with Disabilities Act (ADA), and other federal disability rights laws and programs. It measures progress based on recommendations made in a prior study NCD issued in 2000.

View report

According to a recent report, Wisconsin’s lack of sufficient investment in public transportation puts seniors, people with disabilities and low incomes, and communities of color at a disadvantage.  A recent survey by the Survival Coalition of Wisconsin Disability Organizations found that 59 percent of those surveyed (older adults, people with disabilities and their families) said they had trouble obtaining or keeping a job due to lack of transportation services.  

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IMMEDIATE RELEASE: November 1, 2018

Contact: Lisa Pugh, 608-469-9385; Lisa Schneider, 920-540-1094; Jane Mahoney, 608-228-8096

Family Caregivers Share Challenges and Rewards of Caregiving in November 1 Kick-Off

Madison, WI –

Family caregivers from across Wisconsin are sharing their stories in the State Capitol today as a kick-off to National Family Caregiver Month. The Governor’s office has issued a formal proclamation declaring November as the month to recognize the value of caregivers who contribute nearly 588 million hours of unpaid care in Wisconsin annually, valued at $6 billion.

Nancy Gapinski of Glendale who is speaking at the event says people often ask her how she does it when caring for both her two children and her 85-year-old mom who lives with their family.

“I remember the moment that I joined the ‘Sandwich Generation’ in 2006 when I was pregnant with our first child and my mom had an unexpected double bypass surgery and then inpatient cardiac rehab,” says Gapinski. “Her needs have increased over the years. I’ve adjusted my employment to meet my mom’s needs and that of our children. I changed employment, reduced work hours, worked from home, and recently quit my part-time job because of my mom's needs, but I wouldn’t have it any other way.”

A recent survey of caregivers of people with disabilities in Wisconsin revealed that 98% report some level of stress; 50% are very or extremely stressed. 92% of caregivers reported that caregiving responsibilities affected their employment with 52% giving up on outside employment entirely.1

1 Family & Individual Needs for Disability Support Report 2017 (Inst. on Community Integration and The Arc of the United States)

2 Survival Coalition of Wisconsin Disability Organizations

3 Wisconsin Personal Services Association.

The Governor’s proclamation being presented to family caregivers today indicates that 80% of Wisconsin residents including older adults who need care receive that support from family and friends at home instead of in nursing homes or other facilities. Due to a significant direct care worker shortage, 85% of Wisconsin residents who rely on paid caregivers indicate they cannot find staff to meet their daily needs2. 91% of personal care agencies statewide report they have had to turn away clients because of lack of workers.3 

The newly formed Wisconsin Family and Caregiver Support Alliance of aging and disability groups says both in Wisconsin and nationally families are the backbone of the CareForce.

“Our mission is to raise awareness of family and caregiver support needs and increase the availability of and access to services and supports - both paid and unpaid - which will keep people across the lifespan engaged in their community as long as they desire,” says Lisa Pugh, co-chair of the Alliance.

Deb Notstad of Stoughton who cares for her 27-year-old son Adam with developmental disabilities and is speaking at today’s event says caregiving for her family has been both rewarding and challenging.

“It affects everyone in the household. I have lost hundreds of hours of work time at my job, not only providing direct care but also consulting with medical doctors, nutritionists, therapists and others. It limits the amount of time we can spend outside the home,” says Notstad. “We are committed to ensure that Adam has a full, engaging life.”

“I am glad that the caregiving relationship is being celebrated this month,” says Gapinski. “We are so grateful that Wisconsin values and invests in programs that help people stay in their homes and out of nursing homes,” says Gapinski.

Family caregivers and supporters are invited to join the Wisconsin Family and Caregiver Support Alliance (WFACSA) in celebrating caregivers all month long through a “You Might Be a Caregiver If…” campaign. Bi-partisan legislators who spoke at today’s event - Rep. Mike Rohrkaste, R-Neenah and Rep. Deb Kolste, D-Janesville - added their own personal reflections about caregiving and the need for statewide solutions. WFACSA is asking caregivers to contact their legislators this month to share their caregiver experience.

All Wisconsin caregivers are also encouraged to fill in the blank for “You Might be a Caregiver If…” and share their stories throughout November. Wisconsin caregivers will be featured on social media all month long. Share stories here: http://wisconsincaregiver.org/family-caregiver-month

The Administration for Community Living is pleased to launch our newly redesigned Eldercare Locator website. Located online at eldercare.acl.gov, the updated website makes it easier for older adults and their caregivers to find essential aging resources. New features include:

• A mobile-optimized design to easily access the Eldercare Locator on a computer, phone, or tablet
• A geographical search bar allows visitors to search for local aging resources from any page on the site
• Caregiver Corner with answers to the most frequently asked questions the Eldercare Locator Call Center receives from caregivers
• A new “Learn More About” section that provides information on popular topics like transportation, support services, elder rights, housing, health, and insurance and benefits
• A centralized location that enables older adults and caregivers access Eldercare Locator brochures on topics important to their health and well-being

For more than 25 years, the Eldercare Locator Call Center and website have served as critical tools to assist older adults and those who support them in navigating the range of services and options available to seniors. In 2017, more than 470,000 visitors accessed the Eldercare Locator’s website. The Call Center receives more than 350,000 calls every year and answered its 4 millionth call earlier this year.

We encourage you to explore the new website. We will continue to expand and update our resources to provide valuable information for older adults and their caregivers to serve our vital and ever growing aging population.

Launched in 1991, the Eldercare Locator is a national information and referral resource providing support to consumers across the spectrum of issues affecting older Americans.