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Stepping off a sidewalk curb. Running down the stairs in your house. Cutting fruit for dinner. Crossing the street to get the mail. What do these things have in common? They all have a physical factor of caution. Obviously, most adults don’t think twice about doing any of these things. Simple tasks become second nature as children grow into adults. When was the last time you actually thought about being cautious when you were running down a staircase to do something? Unless there are obvious sign of danger, most people don’t even think about the hundreds of risks they take in a day. Albeit, very small in most cases, every single thing we do has some level of caution associated with it. Some people are known to be more cautious than others. It’s no different when it comes to people with disabilities—some of us are way more cautious than others.
In a journal entry about a year ago, entitled, Dignity of Risk, I talked about the big risks I’ve taken in life. I explained that the big risks I’ve taken have taken have led to opportunities I’ve never could have imagined and have really shaped my life. While that’s 100% true, there are several things that I have to do very cautiously every day. Most things that I have to be careful are that most people wouldn’t have to even think about. Things as simple as turning on my wheelchair after I’ve been sitting at my computer desk working all are things that I have to really careful while doing because if I hit my phone off the mount, I couldn’t contact anyone until my next worker came. This has happened a couple of times before, and it’s a scary feeling. As minute as this sounds, another example would be when I feed myself lunch, I have to be very careful not only that I don’t drop the food, but I also have to be very cautious that I don’t choke myself. Until recently, this wasn’t a huge concern; however, within the last month or two, I’ve noticed that eating has become a bit more difficult. So far, fortunately, I’ve been able to clear my throat on my own by coughing, but, when I feed myself lunch, nobody would be here to help me if I were to actually choke. I have to be very cautious when I eat by myself.
Another thing that I have to be very careful about is moving around my apartment by myself. Yes, my apartment is accessible, but if a tire on my wheelchair would get caught on a doorway or something, I would literally be stuck until someone came to help me. Yes, I would have my phone so I could text people for help; however, depending on the situation, I could be stuck in the same spot for hours. Being stuck isn’t the only thing I have to worry about. A power wheelchair is like an automobile—things wear out and the you experience mechanical problems from time to time. This is what I’ve been experiencing recently. As luck would have it, the day before I was supposed to come back to my apartment after the holidays, an error message started flashing on my joystick. We called the wheelchair place, and they had us try a couple different things; none of which got rid of the error. They said as long as it was working OK, I should be fine to go back. It continued to flash, so a couple weeks later, I had a doctor’s appointment in Fondy and we arranged for my wheelchair to be dropped off at the shop so they could determine what was wrong with it. They thought it was the joystick, so a new one was ordered. Well, it finally came in and my wheelchair guy came to my apartment to replace it. Unfortunately, the error message popped up on the new joystick, so it wasn’t what they thought. Knock-on-wood, the chair is still working fine, but I find myself being even more cautious when I’m alone. I’m so afraid of getting stranded.
Other unique things that I find myself being overly cautious about are things that seem miniscule to most people. A simple task like restarting my computer can be risky to do when I’m alone. I have so many pieces of adaptive equipment that plug into my computer that when I have to restart, it’s always a gamble whether or not everything is going to work. If a piece of equipment isn’t working, I have to wait until someone is here to unplug it and plug it back in.
There are several things like that where if I attempt to do it myself, I risk the chance of doing more harm than good. In other words, if I attempt to do something myself, I risk messing it up. I’m constantly trying to balance being cautiously independent and risking messing whatever it is up to the point where I can’t proceed without assistance from another person. At times, it can be mentally wearing trying to be as independent as possible; yet, having to use an abundance of caution at the same time.
While most people likely don’t realize it, every single person uses some level of caution on a daily basis. Caution is a human instinct. People have a wide variety of caution. Some people are overly cautious; while others are riskier. Being a cautious person comes with pros and cons. On one hand, you may miss out on opportunities because you like to play it safe, but, on the other hand, playing it safe gives you assurance. Each of us has to find a balance of caution that she/he feels comfortable with. There is no such thing as a right level of caution. It’s an individual choice. I challenge you to test your level every once in a while—by doing so, it could lead to something you’d never dream of!
***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.
The number of people with disabilities across the country who are employed is at its highest level since federal officials started keeping track. According to the U.S. Department of Labor’s Bureau of Labor Statistics, 22.5% of people with disabilities had jobs in 2023. That’s an increase of 1.2 percentage points from the year before.
ADMINISTRATION FOR COMMUNITY LIVING: ACL’s DCW Strategies Center Launches Multi-Pronged Effort to Strengthen Direct Care Workforce
By SD Network, 2024-02-27
New TA Opportunities and Resources To Address the Dire Shortage of Direct Care Professionals
This press release was posted earlier today on HHS.gov.
HHS Announces a Multi-Pronged Effort to Strengthen Direct Care Workforce
“Today’s announcement reflects the Biden-Harris Administration’s steadfast commitment to strengthen the caregiving infrastructure and increase the availability of home and community-based services for older adults and people with disabilities,” said HHS Secretary Xavier Becerra. “Like our efforts to support the development of clinicians and grow the behavioral health workforce, the Direct Care Workforce Strategies Center is an important component of our Health Workforce Initiative.”
“Urgent action is needed to address the shortage of direct care professionals, which is threatening to reverse decades of progress in community living,” said Alison Barkoff, who leads the Administration for Community Living. “The DCW Strategies Center was created to strengthen collaboration across state agencies, direct care professionals, people receiving services, and other stakeholders in order to improve recruitment, retention, and development of this critical workforce. The initiatives announced today are an exciting step forward toward this goal.”
Two technical assistance opportunities are available to states:
- DCW Intensive Technical Assistance, which will facilitate collaboration among state agencies – including Medicaid, aging, disability, labor and workforce development systems – and with stakeholders to improve recruitment, retention, training, and professional development of the direct care workforce. It will include a focus on strategies to help states sustain direct care workforce initiatives funded through the American Rescue Plan. The DCW Strategies Center will provide up to 250 hours of individualized technical assistance on a variety of issues for up to six cross-agency state teams. Each team will be assigned a coach and have access to subject matter experts to support them in addressing their state’s unique needs. Each team will include representatives from the state’s Medicaid, aging, disability, and workforce development agencies, in addition to other stakeholders. The support provided through this initiative will be coordinated by a consortium led by ADvancing States, in partnership with the National Association of State Directors of Developmental Disability Services and the National Association of State Medicaid Directors.
- DCW Peer-Learning Collaboratives, which will bring together four to six states in a working group focused on a particular topic. There will be up to three learning collaboratives available to states. The DCW Strategies Center will host monthly virtual meetings focused on group learning to facilitate information sharing on best practices, innovative strategies and demonstrated models for growing the direct care workforce. In addition, each participating state will receive up to 70 hours of individual technical assistance on a topic or issue important to the state. Each participating state will be expected to accomplish one policy or program-related milestone within the parameters of the topic of focus as a result of participation in one of the collaboratives.
Today also marks the official launch of the DCW Strategies Center website. The website serves as the national hub for resources including information about best practices, promising strategies, upcoming events, webinars and technical assistance opportunities, and more to support states, stakeholders and communities in strengthening and expanding their local direct care workforce. The library features resources from federal agencies, as well as resources published by partners from all levels of government, research and advocacy organizations, non-profits and industry, and other stakeholders.
Finally, on Thursday, March 7, at 10:30 a.m. EST, the DCW Strategies Center will kick off a technical assistance webinar series. The series will address a variety of topics related to strengthening and supporting the direct care workforce. In the first session, participants will learn about the DCW Strategies Center and hear from senior leaders from the White House and from across the U.S. Department of Health and Human Services and the U.S. Department of Labor, who will share some of the work being done by federal agencies to strengthen the nation’s capacity to support community living by improving recruitment, retention, and training of this vital workforce.
About the direct care workforce crisis
Low wages, lack of benefits, limited opportunities for career growth, and other factors have resulted in a long-standing shortage of these critical professionals. That shortage reached crisis levels during the COVID-19 pandemic and continues today, with more than three-quarters of service providers declining new participants and more than half cutting services.
As a result of the workforce shortage, people who need assistance often have no option except to move to a nursing home or other institution; people who want to leave these facilities cannot; and the health and safety of those who live in the community are put at risk.
As the populations of older adults and people with disabilities grow, so does the demand for home and community-based services. Without urgent action, the problem will only continue to get worse.
About the DCW Strategies Center
The DCW Strategies Center provides technical assistance to states and service providers and facilitates collaboration with stakeholders to improve the recruitment, retention, training, and professional development of members of the direct care workforce.
ADMINISTRATION FOR COMMUNITY LIVING: Development and Leadership Opportunities Open for Youth with I/DD
By SD Network, 2024-02-23
Development and Leadership Opportunities Open for Youth with I/DD
The Center for Transition to Adult Health Care for Youth with Disabilities, an ACL grantee, is recruiting youth and young adults ages 12-26 with intellectual and developmental disabilities (I/DD) to participate in development and leadership opportunities. These opportunities will allow members to grow, build relationships, and impact national work while receiving a stipend for their time and work. There are two opportunities available:
- Youth Steering Committee (YSC) Member: The YSC is a group of youth ages 17-26 who guide the center's design and operation. The YSC guides the work plan, develops resources, and supports evaluation efforts. YSC members receive ongoing support and education to build their knowledge about health care transition and leadership skills.
- Youth Development Initiative (YDI) Committee Member: The YDI is a group of youth ages 12-17 with I/DD who will receive training and mentoring by young adult leaders also with I/DD. This initiative will help them understand health care transition, advocacy, and self-determination. These skills support youth in their own transition and prepare them for potential leadership opportunities.
ILRU: Volunteers Needed for a Research Study for People with Spinal Cord Injury (SCI)
By SD Network, 2024-02-23
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AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: Fall 2024 Internship Program Application Now Open!
By SD Network, 2024-02-23
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ADMINISTRATION FOR COMMUNITY LIVING: New Research Funding Opportunity for RERC on Information and Communication Technologies Access
By SD Network, 2024-02-23
New Research Funding Opportunity for RERC on Information and Communication Technologies Access
ACL's National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is announcing a new funding opportunity for a Rehabilitation Engineering Research Centers (RERC) program on information and communication technologies access.
The purpose of the RERC program is to improve the effectiveness of services authorized under the Rehabilitation Act by conducting advanced engineering research and development of innovative technologies designed to solve particular rehabilitation problems or remove environmental barriers.
The RERC on Information and Communication Technologies Access will conduct research and development toward innovative technologies and strategies that will make information and communication technologies optimally accessible and usable for people with disabilities.
FORBES: 10 Genuine Ways Companies Can Prioritize Accessibility And Inclusion
By SD Network, 2024-02-16
According to the World Economic Forum, of the 90% of companies that claim to make diversity a priority, only 4% are inclusive of people with disabilities. Companies can take steps to improve efforts by focusing on a key area of business: communications and events. This article explains some effective ways a company can ensure it is making efforts when it comes to disability, inclusion and accessibility in its communications and special events.
Self-Determination Network News:
February 2024
Connect | Share |Learn | http://sdnetworkwi.org
Please Help InControl Wisconsin's Caring Across Cultures Project
Are you someone who hires direct care workers? Are you a family member of someone who receives support from a direct care worker? Are you a direct care worker? If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them. We will give you questions to answer, to make it easier for you.
Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)
Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.
What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.
You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.
Here is a document to help you record your own video or audio. This document will also tell you how to send us your finished recording: CLICK HERE
Need some help?
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You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.
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Are you coming to Disability Advocacy Day, State Capital in Madison, March 15? We will have recording equipment on site.
Ready to Do This?
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Questions for you to answer when you record yourself
Disability Advocacy Day 2024
Registration is open for Disability Advocacy Day 2024! Join us in Madison on Wednesday March 20th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights! It's free to attend, but you must register by March 1st! Register now!
2024 Self-Determination Conference Call for Presenters
Are you interested in presenting at the 2024 Self-Determination Conference? Session proposals for are now being accepted for Tuesday, October 22nd and Wednesday, October 23rd, 2024. This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined life. Proposals due by on May 10th. Submit an application 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.
This month, we shined the spotlight on Chad. This rock climbing fanatic volunteers his time doing all sorts of advocacy things. Check out this month's Member Spotlight to get to know Chad.
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:
- What is something that you have done that you are proud of?
- What is it like to be a channel host?
- The caregiver crisis is real
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:
- New Report: Kaiser Family Foundation has published a new report that provides insight into one important measure of unmet need for home and community-based services across states. Learn what the report reveals.
- Competitive Rock Climber Proves People with Disabilities Can do Anything: For this competitive athlete, rock climbing is just a sport. Find out how this climber excels despite having limitations.
- Long-Range Plan: The Administration for Community Living has released its 2024-2028 Long-Range Plan for the National Institute on Disability, Independent Living and Rehabilitation Research. Learn what it includes.
- New Enrollment Process for Providers: Beginning in September 2024, the Wisconsin Department of Health Services will require all adult long-term care waiver service providers to enroll with Wisconsin Medicaid through the ForwardHealth Portal. Read more about this process.
- Medicaid Issues to Watch: In 2024, many issues are at play that will affect Medicaid coverage, financing, and access. Read about what else to watch for.
- Proposed Changes to the Census Dropped: After strong pushback from the disability community, the U.S. Census Bureau is no longer moving forward with a proposal that could have decreased the estimated disability rates in the country. Learn about what the proposal would have asked.
- Businesses Continue to Fall Short: A recent survey shows that businesses continue to fall short when it comes to meeting the needs of customers with disabilities. Find out what many advocates think that the main problem is.
- Inclusive Town: The town of Union Grove banded together behind a common goal - to give everyone an equal chance by hiring as many people with disabilities as possible. Read about what the town has done.
- Self-Direction Inventory: Applied Self-Direction conducted an extensive national survey of self-direction programs in the United States. Check out the many interesting statistics in the report.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Building Blocks To Effectively Respond To Court Disability Related Challenges And Difficult Situations: February 20th, 1p.m. to 2:30p.m., Virtual
- Webinar: Employee Work Areas And Break Rooms: March 7rh, 1:30p.m. to 3p.m., Virtual
- 2024 National Self-Direction Conference: March 14th-15th, Marriot Waterfront, Baltimore MD
- Disability Advocacy Day: March 20th, 10a.m. to 3p.m., Monona Terrance and the State Capitol, Madison WI
- 2024 Annual Disability Statistics Conference: Surveys, Statistics, And Identity: March 28th, Virtual or Washington D.C.
- 7th Annual Older Adult Mental Health Awareness Day Symposium: May 2nd, 9a.m. to 4p.m., Virtual
- Circles Of Life Conference 2024: May 16th-17th, Holiday Inn, Stevens Point WI
- Employment First Conference: May 21st, 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.
APPLIED SELF-DIRECTION: 2023 National Inventory of Self-Directed Long-Term Services and Supports Programs
By SD Network, 2024-02-12
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