News
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.
The Wisconsin Department of Transportation invites the public to review and offer comments on the 2018 Americans with Disabilities Act (ADA) Transition Plan.
Public comments on the plan will be used to help guide the department’s strategy for ADA improvements moving forward. The full plan and information about public comments can be found online at the link below.
WisDOT encourages anyone interested, including individuals with disabilities or organizations that serve individuals with disabilities, to participate in the public comment period through Nov. 2, 2018.
October 2018
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Hurry! Registration Closes Friday!
Register today for the 2018 Self-Determination Conference! The annual conference works to empower people with disabilities in Wisconsin to have more control over their lives. More than 600 people each year participate in the conference to learn more about self-determination and Self-Directed Supports so they can live independently, be members of their communities, and use public funds efficiently. The conference participants include people with disabilities and their family members, direct care providers, and professionals from Wisconsin’s disability community. Registration closes this Friday, October 12th. Register today!
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.
For October, we shine the spotlight on Jeff. This classic rock loving man always tries to keep a positive attitude regardless of what life throws at him. He enjoys being able to use self-direction to choose what he wants in life. Stop by this month's Member Spotlight to get to know Jeff.
Volunteering or being active in the community often makes people feel good about themselves. For many people with disabilities, it often seems impossible to give back to the community. In this month's entry, Stacy shares how she's able to find ways to give back. How do you give back? We encourage you to share your thoughts and experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- Travel App: Travelling is often difficult for people with disabilities. Read about how a Wisconsin man is developing an app to help make travel more accessible.
- Access to Healthcare Grant Opportunity: The U.S. Department of Transportation’s Federal Transit Administration has announced the availability of $6.3 million in competitive grant funds for transit coordination projects that improve access to healthcare. Applications are due November 13th.
- Annual Report: The Wisconsin Board for People with Developmental Disabilities has released its 2017-2018 Annual Report. It details their mission, membership, goals, accomplishments, and budget. Take a look what they're up to.
- Survey Shows Critical Transportation Needs: A recent survey by the Survival Coalition reveals major transportation issues for older adults and people with disabilities in Wisconsin. Find out what people are reporting.
- Uncertainties for Medicaid and Public Health Programs: Health departments and community clinics report that local funding has been inadequate for some time. Learn what is causing these concerns.
- Scholarship Opportunity: The American Association on Health and Disability is accepting applications for the Frederick J. Krause Scholarship for undergraduate (sophomore standing and above) and graduate students with disabilities who are majoring in a field related to disability and health. Applications due November 15th.
- Supporting Self-Sufficiency and Inclusion: Landmark laws and advancements in technology are often credited as helping people with disabilities succeed; however, there are many simple solutions to help people be independent and included. Read about ways to help.
- Home Health Care Crisis: In one way or another, the home care crisis will soon affect everyone. Listen to a podcast and find out what factors created this crisis.
- Programs Report: A recent report discusses well-known programs serving three categories of people with disabilities: physical disabilities, intellectual and developmental disabilities, and mental illness. Learn about what these programs offer.
- Architectural Barriers Act: The Architectural Barriers Act (ABA) stated that any buildings that were built or altered with federal dollars must be accessible. Read about how this first disability law in the US paved the way for other laws which further expanded disability rights.
- Updated Air Travel Handbook: The Airports Council International World (ACI) has put out a new edition of its Airports & Persons with Disabilities Handbook which includes new policies designed to help travelers with disabilities. Find out about these new policies.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: ABLE Basics: How It Works: October 10th, 12p.m. to 1p.m., Online
- Ability Fest: October 14th, 7:30a.m. to 4p.m., Camelot Golf Course, Lomira WI
- Webinar: ABLE: The Big Picture: October 18th, 12p.m. to 1p.m., Online
- WI FACETS Workshop: Self-Advocacy Spotlight: October 23rd, 6p.m. to 8p.m., WI FACETS, Milwaukee WI
- 2018 Self-Determination Conference: October 29th-31st, Kalahari Resort, Wisconsin Dells WI
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.