News
When was the last time you really watched a person get into a swimming pool? Do we stare at girls dancing at a wedding? Do we watch when people do ordinary things like this? Typically not—unless it’s different. We are accustomed to seeing people do things a certain way. When a person does a task or activity different, we are interested. It’s not wrong--it’s human nature to want to watch someone do something in a different way. For people who have visible disabilities or health conditions, it sometimes feels like you’re in the spotlight anytime you go out in public.
In a journal entry a few years ago, I wrote about fitting in at various social events. Using a power wheelchair and having uncomfortable movements understandably draws attention to myself pretty much wherever I go. It’s just something I’ve learned to deal with. Usually, I do whatever I can not do make even more of a scene when I’m out. It doesn’t work too well most of the time, when I’m at a gathering with friends or family, I try my hardest to keep my movements under control and not make too much of a scene. As I explained in previous entries, though, when I try not to do something intentionally, my body doesn’t cooperate. In fact, it does the complete opposite - - the harder I mentally try, the more my body does the opposite. It’s part of Cerebral Palsy. Usually, I just “try not to try” and just ignore my body. I’m learning that it’s pretty much all I can do in those situations.
There is a different kind of attention when I try do something ordinary, but it causes a scene because I do it different. Let me try to explain. A few years ago, I was at a friend’s wedding. She had worked for me for a few years and we became friends. My mom went with me to the wedding. I didn’t know anyone but the bride, and I was the only one with a visible disability. Obviously, some of her family knew about me, but I didn’t know anyone else which was fine. I was just there to support my friend. My mom ended up running into some people she knew, so we sat at the reception with them. It was a nice time. However, the whole night, my mom kept urging me to get on the dance floor. I kept saying no. When we left, she said, “I really wish you would have danced. It warms people’s heart to watch you dance.” I tried to explain to her that’s exactly the reason I didn’t want to. I didn’t want to be a spectacle that night in front of people I didn’t know. At other weddings, yes, I’ll get out on the dance floor, but, it’s different around people who I know.
Another example is when I get in and out of swimming pools. I love to swim and it’s so good for my muscles. However, when I get in and out of pools, it’s a scene. My parents have a system down. It takes both of them to get me in and out. Getting in is easier than getting out. They get me out of my wheelchair, sit me on the edge of the pool, one of them holds me up while the other gets in the pool, and then they ease me into the pool. Getting out is even more of a scene. We sometimes use the lift if the pool has one to get out. Regardless, it’s something that draws attention to us. Normally, in hotels, I don’t care. Usually, we go to places that aren’t crowded, so there’s just a few people around the pool. I figure it’s worth making a scene if that means I can swim. My aunt and uncle have a pool at their house, and this summer we had a big family gathering for my grandma’s 90th birthday. All of our family came in from across the US, and we had a big party. On the second day, it was a pool party. We did family pictures as soon as everyone got there, and people were swimming all day. I wore my swimsuit, but I wasn’t sure I’d go in. After pictures, I was just about to go in because my sister and nephew were in, but then other people (besides family) started arriving. They were friends of my aunt, uncle, and cousins. I quickly changed my mind and didn’t go in. Even though nobody would have probably cared (and likely people would have offered to help), I didn’t want to draw more attention to myself. Does that sound conceited? Probably, but I knew it’d cause a scene.
Unfortunately, I’ll probably always have this issue. It’s just something I’ve learned to deal with. Most of the time, I have a choice whether or not I want to do the activity. It’s a fine line between wanting to experience or do something and feeling like you’re a spectacle. Everyone is different—some people care less about being watched while doing an activity in an unusual way, while others hate being the spectacle all the time. Most of the time, I don’t really mind people looking at me when I’m doing something different because I believe that’s part of advocacy—showing others what I can do despite my challenges. However, admittedly, sometimes I miss out on opportunities just because I don’t want it to be made into a scene. I feel like some things are just not worth being put on stage for.
***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.
On Friday, CDC announced recommendations for boosters of the Pfizer COVID-19 vaccine for people who: are 65 and older, live in long-term care settings, are at high risk for severe illness, or work in a high-risk job. Today’s Policy Roundup includes those details, along with the following:
- CMS guidance: ARP Act funding for Medicaid and CHIP (Coverage of habilitation services, COVID-19 testing and vaccination, and more).
- Input needed: Medicare drug pricing rule
- Input Needed: NQF Rural Telehealth and Healthcare System Readiness Measurement Framework
- Medicare.gov Tool to Compare Nursing Home Vaccination Rates
CDC recommendations for COVID-19 vaccine boosters
On Friday, the CDC recommended booster shots of the Pfizer COVID-19 vaccine for people at highest risk of serious illness and those in high risk occupational and institutional settings. Specifically, CDC guidance now states that people who received their second shot at least six months ago:
Should receive a booster shot if they are:
- 65 years old or older
- 18 years old or older and live in a long-term care setting
- aged 50–64 years and have underlying medical conditions
May receive a booster shot, based on their individual benefits and risks, if they are:
- 18–49 years old and have underlying medical conditions
- 18–64 years year old, and at increased risk for COVID-19 exposure and transmission because of occupational or institutional setting. The CDC website includes a complete list, but it includes front line healthcare workers and congregate care staff.
CDC will evaluate available data in the coming weeks to swiftly make additional recommendations for other populations, as well as for people who received the Moderna or Johnson & Johnson vaccines.
DISABILITY SCOOP: People With IDD, DSPs May Qualify For COVID-19 Vaccine Boosters
By SD Network, 2021-09-27
The Center for Disease Control and Prevention recently approved a booster vaccine for some people. Currently, Pfizer is the only one approved. People who live in congregational settings and those with underlying health conditions are among the people who can get the booster as of now. The CDC didn't specify workers who may qualify, but it is expected that direct care professionals will also qualify.
FORBES: Staff Shortages Are Hammering Long-term Care Facilities, Home Care Agencies, and Families
By SD Network, 2021-09-24
The direct care worker shortage has gone from a problem to a crisis. According to a recent survey, 82% of assisted living facilities and 89% of nursing homes report a moderate to severe shortage of staff. It isn't just facilities either - home care agencies are reporting the same problems. The pandemic just added to this issue. People feel the bottom line is that these workers need better pay.
19TH NEWS: Most home care workers aren’t required to get the COVID vaccine, leaving the people they care for vulnerable
By SD Network, 2021-09-24
Last month, President Biden mandated that nursing home staff get the COVID vaccine or they risk losing their Medicaid or Medicare funding. However, it doesn't include home health care workers. Home care workers make up 53% of the workforce caring for people with disabilities and older adults. Advocacy groups and nonprofits are not currently asking the Biden Administration to require vaccines for these people though. The fear is that this would only add to the workforce shortage crisis.
ADMINISTRATION FOR COMMUNITY LIVING: Press Release: RAISE Family Caregiving Advisory Council delivers report; recommendations for improving support to family caregivers
By SD Network, 2021-09-24
Today the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregiving Advisory Council delivered its initial report to Congress. The culmination of a two-year, multi-faceted effort that gathered input from family caregivers across the country, the report provides an overview of many of the issues faced by family caregivers nationwide and provides recommendations for addressing them.
The 26 recommendations fall under five goals:
- Increasing Awareness of Family Caregivers to increase public understanding of the contributions caregivers make, including helping individuals self-identify as caregivers so that they can get the support they need.
- Engaging Family Caregivers as Partners in Healthcare and Long-Term Services and Supports to better integrate family caregivers into healthcare processes and systems.
- Improving Access to Services and Supports for Family Caregivers including counseling, respite care, peer support, training on common in-home medical tasks, and practical assistance like transportation. Also included is a recommendation for strengthening the paid caregiver workforce.
- Financial and Workplace Security for Family Caregivers to decrease the impact family caregiving can have on the financial well-being and professional lives of caregivers.
- Generating Research, Data, and Evidence-Informed Practices to help create policies and interventions that meaningfully help family caregivers.
The report also includes an inventory of federally funded efforts to support caregivers and interviews with 26 caregivers representing a range of caregiving situations and needs.
The recommendations from the report are the first step to developing a national strategy that will outline critical actions that can be taken at the federal and state levels and by local communities, philanthropic organizations, healthcare providers and providers of long-term services and supports, and others to better support family caregivers.
More than 53 million people provide a broad range of assistance to support the health, quality of life, and independence of someone close to them. Millions of older adults and people with disabilities would not be able to live in their communities without this essential support, and replacing that support with paid services would cost an estimated $470 billion each year.
While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, well-being and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year. All of these challenges have been intensified during the pandemic.
“COVID-19 laid bare the need to address the urgent issues experienced by family caregivers,” said ACL Acting Administrator and Assistant Secretary for Aging Alison Barkoff. “The pandemic exacerbated the challenges of family caregiving. Balancing work, family and caretaking became even more difficult, and in many cases, caregivers had to completely leave the workforce. The pandemic has created a new urgency and momentum to address caregiving.”
The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act, (Public Law 115-119) directs the Secretary of Health and Human Services to develop a national family caregiving strategy. To inform that work, the RAISE Act also directed the establishment of the Family Caregiving Advisory Council providing recommendations on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs.
The Administration for Community Living is leading the implementation of the RAISE Act and facilitates the work of the RAISE Family Caregiving Advisory Council.
The John A. Hartford Foundation and the National Academy for State Health Policy also support the Council, including development of the initial report, by providing resources, technical assistance, and policy analysis. The National Alliance for Caregiving also supported development of the report, collecting and producing the interviews that bring the caregiver voice to the report. The interviews also can be seen in a series of videos.
2022 Circles of Life Conference
May 12-13, 2022
Holiday Inn, Stevens Point WI
The Circles of Life Conference is Wisconsin’s annual, statewide conference for families who have children of any age with disabilities and the professionals who support them.
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U.S. ACCESS BOARD: TRB Issues Report on the Feasibility of Wheelchair Securement Systems on Passenger Aircraft
By SD Network, 2021-09-16
In the Federal Aviation Administration Reauthorization Act, Congress called on the U.S. Access Board to examine the feasibility of wheelchair securement systems for passenger use in airplane cabins. In response, the Access Board commissioned the Transportation Research Board (TRB), of the National Academies of Sciences, Engineering, and Medicine, to conduct a study and issue a report. TRB organized a committee to conduct this assessment that included experts in aircraft interiors and safety engineering, accessibility, wheelchair design and crashworthiness, airline operations, and other disciplines. The committee’s findings are contained in the report "Technical Feasibility of a Wheelchair Securement Concept for Airline Travel: A Preliminary Assessment."
AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: Apply Now for the 2022 Paul G. Hearne Emerging Leader Award!
By SD Network, 2021-09-16
The American Association of People with Disabilities (AAPD) is pleased to announce the application for the 2022 Paul G. Hearne Emerging Leader Awards is now open! We are seeking to recognize emerging leaders or groups with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. While the Paul G. Hearne Emerging Leader Awards have previously recognized only two individuals, we are expanding the eligibility status that groups of people working on an initiative can apply for the award. Everyone in the group applying for the award must identify as an emerging leader with a disability. Two (2) individuals or groups will each receive $7,500 to further a new or existing initiative that increases opportunities for people with disabilities and $2,500 in recognition of their outstanding contributions to the disability community.
We encourage applicants who self-identify as an emerging leader with a disability to apply, regardless of U.S. citizenship, incarceration status, or age. We especially encourage people who have experienced intersecting forms of discrimination and from historically excluded backgrounds, rural areas, and U.S. territories to apply. An applicant’s status as an emerging leader is not necessarily tied to age, education status, employment, or specific experience or involvement in the disability community.
Apply for the 2022 Paul G. Hearne Emerging Leader Award by Wednesday, October 27, 2021 at 5:00pm ET.
AAPD will host a Zoom webinar on Wednesday, October 13, 2021 from 4:00pm to 5:00pm ET for any interested applicants to review the information and answer any questions you have. ASL and CART will be provided. Register here for the webinar. If you have any additional access needs, please email programs@aapd.com.
FORBES: What Moves Some People With Disabilities To Be Disability Activists?
By SD Network, 2021-09-16
Most people with disabilities become advocates at some point. Often, it's not by choice, but whether by necessity trying to get what they need to live a successful life. Some people find that advocacy is their calling and turn it into a career. Others find it best to advocate for issues that pertain just to their situation. This article discusses the notion of disability activism in depth. It talks about the different things that go into activism.