News
PRESS RELEASE: Family Caregivers Share Challenges and Rewards of Caregiving in November 1 Kick-Off
By SD Network, 2018-11-07
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
ADMINISTRATION FOR COMMUNITY LIVING: ACL Launches Redesigned Eldercare Locator Website
By SD Network, 2018-11-07
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.
A lack of accessible restrooms on planes, sensory overload of going through crowds, and security screening are only some of the things that can make air travel difficult for people with disabilities. To help with this, there will be an "Airline Passengers with Disabilities Bill of Rights" developed. President Trump recently signed legislation around airline passengers with disabilities. This includes disability training for Transportation Security Administration (TSA) employees and increased fines for harm to passengers with disabilities or damage to wheelchairs. TSA has to change its training for screening passengers with disabilities. TSA must also have new rules about service animals on planes. The legislation even looks at accessibility best practices for airports and allowing in-cabin wheelchair restraints in the future.
People with disabilities are almost absent from politics. The recent election cycle hosted candidates from many backgrounds, but people with disabilities are missing in elected office. The author states that candidates and elected officials should match a diverse population. Forty-five million people in this country, or 12.6 percent of the U.S. population, live with disabilities. Worldwide, people with disabilities represent the largest minority.
The National Council on Independent Living reported that only 11 candidates who have disabilities were running for Congress. Many contested issues have major effects on people with disabilities this election cycle. Some of these issues are cuts to Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare, and the elimination of independent living programs.
How are you involved with self-determination? Why did you join the SD Network?
Andrea been a Support Broker at Avenues to Community (http://avenuestocommunity.com/) for six years. She has previous experience working with a residential agency and an adult day center for individuals with dementia. I am also a caregiver of a parent with dementia.
As a Support Broker, she has the opportunity to meet people and help them figure out and achieve different dreams. She explains that this includes using her skill as a PATH facilitator or using tools developed by The Learning Community for Person Centered Practices (http://tlcpcp.com) to help figure out different goals. This helps focus on the balance of what is important to (makes he/she happy) and what is important for (health and safety) that each person needs. When individuals have that balance, they are able to make informed choices and self-direct their own lives. She tries to help each person she supports figure out that balance as a Support Broker. She enjoys working with people as they grow and have different experiences.
Andrea joined the Self Determination Network after learning more about person centered thinking and planning from Cindy Kernan. She wanted to find a group of people that she could continue to learn from. She also felt that it was important to learn about what is happening throughout Wisconsin. “The SD Network allows me to see and hear about the good work others are doing,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Andrea is excited that she will soon become a Certified Trainer in Person Centered Thinking through The Learning Community for Person Centered Practices. She was also energized by the recent Self-Determination Conference. “There are a lot of people committed to self-determination and full citizenship for all. It was great to hear what others are doing and how I can be a part of the process,” she explains.
What tip or resource would you like to share with people who want to be more self-determined?
The tip Andrea would share is that self-determination takes learning. She explains that no one ever gets it right the first time and maybe not the second--we learn from our experiences and apply to what comes next. It is also okay to change goals as people learn and grow. Sometimes we learn what we thought we wanted isn't really what we want.
What message would you like to share with the members of the SD Network?
Andrea shares that community and relationships are important components to self-direction. They take time to develop and involve use being present. She encourages people to make sure to take time to nurture those unpaid relationships in those that they support.
What are some of your hobbies?
Andrea enjoys crocheting and spending time with my family. Recently, she started running 5Ks and she’s trying to do at least one per month. She also enjoys being her daughter's Girl Scout leader.
***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.
When’s my next shift? Will the person show up? What do I do if they don’t? Am in the right program? What will my future look like? While most people my age worry about things like wedding plans, their kids’ activities, and buying or remodeling a house, I’m faced with questions that nobody should have to worry about. As I discussed in my August entry, my family and I have started looking into different care and living options for me. Until we recently started researching the options, I had no idea of how absolutely messed up the long-term care system really is.
As I explained in previous entries, when I started college at UW-Whitewater, I was on a wavier program which allowed Medical Assistance to pay for my cares with an agency. When I graduated and moved back to Fondy, my parents and I met with the local Aging and Disability Resource Center (ADRC). At the time, we were presented with two long-term care program options—Family Care and IRIS. Back then, Family Care really didn’t have self-direction options, so IRIS was the obviously right choice for me. At the time, the home care agencies I was trying billed Medical Assistance, so that wasn’t an issue. When we realized that the care agencies weren’t working, I got on the waiting list for Self-Directed Personal Care through IRIS. It worked out that right around the time I got on SDPC I found out that I got the apartment in Oshkosh. I was very lucky that the care agency that was connected to the apartments worked with us and billed through SDPC. That worked incredibly well for over five years until rules changed in IRIS no longer allowing third-party vendors for SDPC. Long story short, I went to an agency that billed Medical Assistance for eight months. For various reasons, that didn’t work out, so I went back to SDPC and have been hiring and managing my own staff for over two years. As I’ve explained, it’s a lot of work and stress. For the time being, my parents and I are making it work because basically we have to, but we realize that this isn’t going to work long term.
When my sister settled down in the Madison area about three years ago, I thought that I’d eventually move down there—not only to be closer to her, but since it’s a bigger city, I had thought that services would be better and there’d be better opportunities. Just over a year ago, I got on waiting lists for two income-based accessible apartments in Madison. We knew that the list was years long, but at least I was on the list. A few months ago, when cares really started becoming a challenge again, my mom and I started researching our options. What we’ve learned is that the options are very limited and the “system” is unbelievably broken.
In early October, my mom and I went to Madison for a day and met with the ADRC and the Independent Living Center. My sister happened to have the day off, so she joined us. I went into these meetings with a very open-mind wanting to learn about all the options available. We learned that everyone who receives long-term care services in Wisconsin has to in one of three programs: IRIS, Family Care, or Partnership. IRIS is the least restrictive and Partnership is the most; Family Care falls in between. Initially, our first thought was to switch to Family Care because it still has self-direction options, but yet it sounded like they’d help me manage my care. Perfect, right? We then began to ask questions about the care agencies and housing. Due to the care shortage everywhere, agencies are having a hard time filling shifts and many aren’t taking on new clients.
There are several different types of living options for people with disabilities, but, unfortunately, none of them are really appropriate for me. There are basically Adult Family Homes, Assisted Living Facilities, and Residential Care Apartment Complexes (RCACs). There are variations of these, but they are the main categories. Adult Family Homes are basically group homes. There are very few for those with physical disabilities, and honestly, I don’t want that. Assisted Living Facilities usually have age limits (usually 55). RCACs are probably the closest thing I’d consider, but I don’t fit the criteria (usually require less than 28 hours of care per week and need to be able to transfer independently) for those either. We asked about how income-based housing works. The Dane County Section 8 waiting list is now closed, but they won’t even tell people where they are on the list. You aren’t allowed to tour an apartment until you’re at the top of the list and your application has been accepted, so you’re expected to apply for these apartments without even seeing them! From the little information we were able to find online about them, we learned that the apartments are usually one bedroom and are quite a bit smaller than what I have.
After learning a lot of information, my mom and I discussed our options on the way home. I realized that I’d be no better off in Madison. My apartment here is really pretty nice, and we can work on improving my situation here rather than starting all over down there. I had decided I wanted to look into Family Care in Winnebago County. It wasn’t an easy decision as I felt like I was giving up my independence I had in IRIS, but, nevertheless, I was ready to at least consider it because I understand something needs to change. My mom called the local ADRC the next morning to try to setup an appointment to learn more about Family Care. The case worker asked why I wanted to switch. My mom explained that we were just having too much trouble with cares and wanted to learn about Family Care. The worker wasn’t very nice or helpful, and she told us that we’d be no better off because agencies are having the same problem.
My mom and I have done some more research on our own and found out that there are two Managed Care Organizations (MCOs) that work with Family Care in my county. Neither of them will meet with us unless I enroll. The list of their providers is on their websites; however, you don’t know what your options truly are until you enroll and apparently have a team meeting. It’s incredibly frustrating because there are a lot of home care agencies out there, but because they get a better deal with contracts from the MCOs, very few of them accept Medical Assistance. The few agencies in my area that do seem to be either be full or only provide services during daytime hours which makes no sense to me. How can a home care agency that provides personal cares for people only provide care until 7p.m.? I’d be stuck in bed for 12+ hours!
Where does all of this leave me? Good question. Nobody really has a solution at the moment. We continue to do research and look for options. Personally, it’s very nerve-racking and depressing knowing there isn’t a good solution. What’s one supposed to do? Many people say raise wages for caretakers; while I agree that’d definitely help, I don’t think it’d fix everything. I’ve spent many sleepless nights pondering; I don’t know what the answer is. It’s not likely to happen anytime soon, but I think a complete overhaul of the “system” needs to happen. I’m not even sure what that would entail, but things need to change.
So, while I’d give anything to have the worries most people my age have, I have to remind myself that I have a special purpose in life—it’s to advocate and pave new paths for people with different abilities. I don’t have the answers, but I know giving up is not an option in my family!
***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.
LEXOLOGY: DOJ Says Failure to Comply With Web Accessibility Guidelines is Not Necessarily a Violation of the ADA
By SD Network, 2018-10-14
In June, legislators asked the Department of Justice to “state publicly that private legal action under the ADA with respect to websites is unfair and violates basic due process principles in the absence of clear statutory authority and issuance by the department of a final rule establishing website accessibility standards.” The letter urged the Department of Justice (DOJ) to “provide guidance and clarity with regard to website accessibility under the … ADA.” While the Department didn't do exactly what members asked, it did provide some helpful guidance and urged Congress to work on legislation that addresses web accessibility.
Wallet Hub has released its annual "Best & Worst Cities for People with Disabilities" report. They base their rank on three main categories: Economy, Quality of Life, and Health Care. Milwaukee and Madison made made it in the top 100 again this year. In addition to the overall rankings, it also breaks down the bests and worsts of several different facets in each category.
It was recently announced that people who receive Social security and SSI benefits will see a relatively large increase in 2019. It will increase by 2.8% which is the largest increase since 2012. Inflation appears to be on the rise which effects everything from mortgages to credit card bills. Federal benefits automatically increase when cost of living rises.
ADMINISTRATION FOR COMMUNITY LIVING: ACL Seeks Nominations for Advisory Councils on Family Caregiving
By SD Network, 2018-10-14
The Administration for Community Living is leading the Department of Health and Human Services’ efforts to establish a new advisory council to address the needs of family caregivers.
The RAISE Family Caregivers Act directed the establishment of the Family Caregiving Advisory Council to provide recommendations to the Secretary of Health and Human Services on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs.
The Advisory Council will include up to 15 voting members, with at least one from each of the following constituencies: family caregivers; older adults who need long-term services and supports; individuals with disabilities; health care and social service providers; providers of long-term services and supports; employers; paraprofessional workers; state and local officials; accreditation bodies; veterans; and as appropriate, other experts and advocacy organizations engaged in family caregiving. Deadline is December 3rd.