News
Hiking is becoming a very popular summer activity. Until recent years, there were many accessible hiking trails. More and more trails are being made to be accessible to everyone.The New York Times put together a a guide to accessible hiking trails in the US.
CENTER FOR MEDICARE AND MEDICAID SERVICES: Supporting Adults with Intellectual and Developmental Disabilities and Their Aging Caregivers
By SD Network, 2023-06-23
As part of its commitment to advancing health equity and access to care for underserved populations, CMS released a set of resources addressing the needs of adults with intellectual and developmental disabilities (I/DD) living with and cared for by aging parents or guardians. The release includes resources for state Medicaid and partner agencies to provide new or additional support to adults living with I/DD and their caregivers as they age and experience life transitions.
MANAGED HEALTHCARE EXECUTIVE: More Older Adults Plan to Use Digital Health Technologies as They 'Age in Place'
By SD Network, 2023-06-23
U.S. News & World Report recently surveyed 2,000 U.S. adults aged 55 and older who shared why they are or aren’t using assistive health-related technologies, what their goals were of aging in place, which technologies they use the most and what their experiences were.
TMJ4NEWS: CrossFit gym in Waterford hosts Uniquely Abled, an exercise class for adults with disabilities
By SD Network, 2023-06-17
Inside a Waterford warehouse is a unique exercise class. "Uniquely Abled" is a CrossFit class for people with disabilities. It helps people feel more comfortable and confident in their own bodies.
DISABILITY SCOOP: As Medicaid Cutoffs Surpass 1 Million, Worries Grow Over Impact On People With Disabilities
By SD Network, 2023-06-17
Already, states have disenrolled more than a million Medicaid beneficiaries, according to data from Kaiser Family Foundation (KFF), a nonprofit that conducts health policy research. In many cases, people are being cut off because they didn’t complete the renewal process, KFF found, with so-called “procedural disenrollments” accounting for as many as 89% of Medicaid terminations in some states.
ADMINISTRATION FOR COMMUNITY LIVING: SSA Funding Opportunity on Employment of People with Disabilities
By SD Network, 2023-06-14
SSA Funding Opportunity on Employment of People with DisabilitiesApplications due July 31, 2023
The Social Security Administration (SSA) has announced a new funding opportunity for conducting interventional research to support its programs. They seek applications for research to be conducted under five priority areas:
SSA intends the projects to have a project period of up to five years, with the first year intended to put any necessary data agreements into place, recruit additional partners, and conduct any other implementation planning activities. If the project is able to meet these milestones in the first year, funding may be continued to field and evaluate the project for up to four years.
If you have difficulty accessing the full announcement electronically, please contact Grants.gov at 800-518-4726 or support@grants.gov. |
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ADMINISTRATION FOR COMMUNITY LIVING: CMS Releases Resources on Supporting Adults with I/DD and Their Aging Caregivers
By SD Network, 2023-06-14
The resources are especially important because the number of people with I/DD receiving Medicaid home and community-based services and living with family has increased by 143% between 1998 and 2018. An estimated 1 million households in the U.S. include an adult with I/DD living with and supported by an aging caregiver, and this number is growing.
As the federal agency leading the implementation of the National Strategy to Support Family Caregivers (the Strategy), ACL is pleased to share resources that can advance implementation of the Strategy and emphasize the importance of ensuring that family caregivers are appropriately recognized and supported. The advisory councils created by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act jointly developed the Strategy in collaboration with ACL and other federal partners with extensive input from the public (including family caregivers and the people they support).
The ACL programs included in the set of CMS resources are:
Self-Determination Network News:
June 2023
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State Budget Advocacy: There is Still Time to Advocate!
This week, the legislative's Joint Finance Committee is making decisions on several budget items that can impact people with disabilities. Tomorrow, June 15th, the committee will be deciding on the Department of Health Services budget. This budget includes includes many disability programs and issues including Family Care, IRIS, caregiver wages, Guardianship Support Center, and Adult Protective Services. We encourage people to call or email your legislators and let them know what priorities you want in the state budget.
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.
This month, we shined the spotlight on Jenny. After a tragic accident changed her life, this amazing lady made the decision to be a person who aspires to live life to the fullest. She has committed her life to raising awareness for people living with paralysis and neurological disorders. Check out this month's Member Spotlight to get to know Jenny.
Who should we shine the spotlight on next?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Wheelchair Elevation: The Centers for Medicare and Medicaid Services recently announced that Medicare will now cover seat elevation devices for power wheelchairs. Learn more about this decision.
- Health Data Report: Reliable health data is important to supporting people with intellectual and developmental disabilities. Being counted is a health equity and civil rights issue. Although data collection about people with disabilities generally has improved in recent decades, there is still not enough information on how many people with I/DD live in the U.S., how healthy they are, and what things affect their health. Take a look at the report that the Administration for Community Living put together from a summit they put together in 2022 focused on health equity, remaining gaps, and priorities for the future.
- The Wait for Services: More than half a million Americans with intellectual and developmental disabilities are currently waiting for government funding for long-term care in their homes. Find out what some states are doing to clear waitlists.
- Advocates Advocate for Significant Pay Increases for Caregivers: It's no secret that Wisconsin advocates for people with disabilities and the elderly have been tiredlessly advocating for better pay for caregivers. Learn what advocates are asking for in the state budget.
- Inclusive Stock Photos: Generally, stock photos often don't include people with disabilities. Read about how the Consumer Product Safety Commission is working to change that.
- Public Comment Needed on Diagnostic Equipment: Medical diagnostic care is essential to everyone, including people with disabilities, and often requires people to transfer onto diagnostic equipment. The U.S. Access Board has issued a notice of proposed rulemaking on standards for accessible medical diagnostic equipment. Public comments are due July 24th.
- Project SEARCH: Project SEARCH provides vocational training for people with disabilities. Learn about how the program helps high school students transition into the workforce.
- Google Maps are More Accessible: With a minor change, Google is making it more obvious to users whether businesses and other public places are accessible to people with disabilities. Find out what small change made this possible.
- WisCaregiver Connection Workforce Platform: In partnership with UW-Green Bay, the Wisconsin Department of Heath Services have developed a training program to help 10,000 caregivers become certified direct care professionals. They also have developed a new workforce platform that will connect employers and job seekers. Find out more about these new programs.
- Protype of Wheelchair Seat on Planes: Delta has introduced a prototype of a new seat that would allow airlines to let passengers to stay in their wheelchairs in the cabin. Learn more about the design.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Addressing Sexual Assault Against People With Disabilities: June 14th, 2:30p.m. to 4p.m., Online
- Webinar: Adaptive Ballroom Dancing: June 15th, 1p.m. 2:30p.m., Online
- Webinar: Peer & Family Support Program: June 15th, 2p.m. to 3:30p.m., Online
- Webinar: Accessible Transient Lodging: July 6th, 1:30p.m. 3p.m., Online
- Webinar: Easy Read Icons: July 10th, 3p.m. to 4p.m., Online
- Webinar: Basic Formatting: July 31st, 3p.m. to 4p.m., p.m., Online
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.
Do you like the steering wheel up or down? Do you prefer the rearview mirror tilted to the left or right? Do you like your showers warmer or cooler? Do you tie your shoes loose or tight? Do you have a certain way you like your pillow at night? There are thousands of things that people adjust to their personal preference. Most of the time, people automatically make these minor adjustments without even thinking about it. People do these things to make life easier or more comfortable. Obviously, every person has different preferences for everything. That’s what makes us unique individuals. People with disabilities are no different. We have preferences about how we like everything just like everyone else. In fact, many times, we have unique preferences just based on functionality.
A few weeks ago, my sweet cousin went to my class reunion with me as my date/caregiver. She’s a speech therapist and has worked with many people with varying abilities. She has helped feed me at family gatherings before and obviously knows how I communicate. She had never been with me solo at an event with me, though. As my mom was helping me get ready, she and I were making a mental note of things that we should explain to my cousin before we go. These things wouldn’t be brought up in normal conversation with anyone, but these seemingly miniscule things make my life so much easier. We probably bombarded my poor cousin, but she did a fantastic job of making sure she did everything right. Those small details made things so much easier and it was a really fun night!
What are the small details I’m talking about? To most people, these won’t make any sense, but, again, personal preferences are what make life enjoyable. For starters, my left side of my body has more control than the right. For whatever reason, it’s so much easier if people sit or stand on my left side to help me eat or drink. When people sit on my right side, because of the way I sit, it’s much more difficult to turn my head and maneuver my body to be able to eat. My right arm also tends to be much more spastic, so, often, my arm accidentally hits the person. On more than one occasion, I accidentally hit food or drink out of someone’s hands. I wish I’d had the confidence to speak up about this when I was younger because it probably would have made things a lot easier. It wasn’t until a few years ago that I started asking people to please sit on my left side. Chalk it up to getting older, I guess.
Another really unique quirk I constantly find myself asking people who help me to do is to move my cell phone like a half inch up on the mount on my wheelchair. Again, it’s hard to explain, but my cell phone mount is right below my joystick on my chair, and the top of my phone needs to be up against the bottom of the joystick. It leaves a half inch of the mount showing. That half inch makes a huge difference for my access. If someone puts it lower, I have a really hard time accessing it. Whenever we train new caregivers, I make sure to have the veteran worker explain it to the trainee. Again, people probably think that I’m crazy for making a production about a half inch, but, in my world, it makes a huge difference.
There are multiple other small quirks I have to make life easier. I need my shoes tied extremely tight otherwise I will kick them off. When I get in bed at night, my head has to be touching the headboard in order to make sure that I can reach my phone and door opener. When workers make my lunch, they have to leave the zip lock bags open because I’m not able to open them. The straw in my water bottle has to be pointing a specific way so I can reach it. Seemingly mundane things like these are what help keep me as independent as possible.
I’ve discussed this a little bit in previous entries, but food is another example of when personal preference comes into play. Obviously, there is the basic like or dislike of individual foods, but, beyond that, there are some common preferences among many people who have cerebral palsy. For whatever reason, certain textures of food really bother some of us. A lot foods that have certain filling tend to bother many people. For example, yogurt and pies absolutely gross me out. When I try to eat something like that, my gag reflex (again, common among people who have cerebral palsy) kicks in and I almost lose my cookies. Yet, I can eat ice cream (I often have the debate with people—yogurt is not the same texture as ice cream) and some puddings. Some people who have cp need their food extremely hot. Another thing we’ve recently noticed is that a lot of people with different abilities tend to prefer to eat one food at a time whether than switching between multiple foods. I don’t know if there is any research on this, but some of us think it’s easier for our palates to adjust to one texture at a time whether than switching between different textures. Again, a small, but important preference.
Everyone has small quirks that they do to be comfortable. Most of the time, people don’t even realize that they have them, but, when you rely on others for physical assistance, those quirks need to be communicated. Sometimes, people may think you’re overly particular, but that’s ok. Those quirks often allow you to be as independent as possible. I have a ton of quirks that are truly based on functionality. I continue to learn small quirks that makes things easier for me. They make a world of difference!
***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.
DISABILITY SCOOP: Delta Developing Seat To Accommodate Wheelchairs In Flight
By SD Network, 2023-06-09
A prototype of the new seat debuted this week at the Aircraft Interiors Expo, an annual gathering of airline leaders and suppliers in Hamburg, Germany. The new seat allows airlines to maintain the design of their aircraft cabin while providing access to headrest, center console tray tables and cocktail table that adjust to serve passengers with wheelchairs in place. It also offers passengers with disabilities an easier time getting on and off airplanes.