News
The Applied Self-Direction website recently released a great short video explaining what self-direction is. It uses plain language and great visuals.
“You’re so lucky to have a place to sit all of the time.” I’ve been told something to that effect more than once. I was told that I’m lucky because I never have to buy new shoes because I never wear out shoes since I don’t walk (which is completely false, I probably go through shoes faster than most people, but that’s beside the point). When people make statements like that, I usually just try to fake laugh it off or ignore it, but really on the inside it bugs me. While some people with disabilities find humor in this, I’m not one of those people--they’re much stronger than me and I give them kudos for being able to laugh it off. Let me be clear, I know people aren’t trying to be mean when they say things, but it irritates me that the thought even crosses their mind. Am I really lucky I have to sit all the time? Don’t they know how lucky they are to be able to stand and walk… even if the conditions aren’t ideal?
My parents and I recently took a trip to Las Vegas. I absolutely love the city, and my parents really trying to get me out there every so often. When we booked our flight, things were looking much better with COVID. Unfortunately, things kind of went backwards lately, but we tried to be really careful. We brought my manual wheelchair because we weren’t going to take anything any chances with the airlines ruining my power chair. We’ve been to Vegas multiple times, and the one thing that struck us this time was the number of people who rented power scooters. There were noticeably more people using scooters out there. While I totally understand that there are hidden disabilities and health conditions that may require a mobility device, it was quite apparent that many people were using them as “toys.” Multiple times, we witnessed people messing around and having races on them. We even saw couples trying to ride on each other’s lap. Yes, we did see some people who clearly needed mobility assistance, but there were a lot of people who appeared to be using them as toys. My parents got irritated because these people were taking up the elevators and clogging up the sidewalks. It irritated me because of the principle of it. I selfishly thought, “why the heck are you using one? Don’t you know how lucky you are to be able to walk?“
Another thing we noticed in Vegas was the number of people who brought their “service dog” everywhere. I’ve written about this before. I understand it’s a fine line because some people do benefit from emotional-support animals, but many people take advantage of being able to use that “excuse.” While having some sort of a vest or identification that the animal wears would expose a person’s personal health issues, it would cut back on the number of animals being “used” as fake support animals. What irritates me is that people take advantage of many of the accommodations that are supposed to help those who really need them.
It goes the other way too—the example that comes to mind is that the lines in the Disney parks. I think the policy has changed now, but when my family went when my sister and I were kids, we were forced to go to the front of lines. While it’s a nice gesture for people with conditions that literally can’t wait in line or people who are terminally ill, we felt very awkward doing it. Why should I get special privileges? We were actually quite embarrassed.
Another example is a few years ago, my mom surprised the family by getting us four accessible tickets for a Green Bay Packer playoff game. She had only gotten them because it was a lottery for accessible tickets for that particular game. My sister and dad are the Packer fans, so I felt like she used my disability to get the tickets. Looking back, I realize it was pretty selfish of me to want to take that experience away from my dad and sister, but I was so mad at her. In the end, it ended up being a moot point because the Packers lost the game before.
There are some “perks” (as some people refer to them as) that I literally couldn’t live without. Long-term care supports are one of those. While I’d love to be able to be off all of the government benefits, that’s just physically not possible. Some people with disabilities can earn enough money to be completely independent and off the so-called system, and that’s awesome. As I unfortunately found out a few months ago, I can only physically do so much without my body flipping out. As frustrating as it is, I have to remind myself that at least I’m doing something to contribute to my needs.
I’m not fully independent in any aspect of life—I never will be. Do I wish I could be and not use any of the specialized equipment I rely on? Of course I do. However, I try my hardest to do what I can. When I see people “take advantage” of specialized equipment or say something irrational, it does affect me. I have to remind myself that they probably don’t realize what they’re doing or saying may be offensive. While I don’t see these situations changing anytime soon, educating people is important. Please take advantage of the abilities you do have. There is a magnitude of specialized technology and equipment to assist people who can’t do various things, but please understand that many people don’t have a choice whether or not to use those things!
***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.
WITN.COM: CDC launches COVID-19 resources to help people with intellectual, developmental disabilities
By SD Network, 2021-09-04
The Center for Disease Control and Prevention recently released a toolkit to help people with disabilities understand more about COVID. The material explain how to protect yourself in plain language.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Annual Self-Advocate Survey
By SD Network, 2021-09-04
Each year, the Wisconsin Board for People with Developmental Disabilities (BPDD) does an annual survey for self-advocates and family members who have participated in a BPDD project. They want to know what you think of our projects!
If you participated in a project this year, please take a couple of minutes to complete this short survey. Your feedback helps us understand how their projects impact people’s lives, and they share this information directly with their funders.
Below is a list of projects, trainings, events and grants that you could have participated in over the last year. Please also fill out the survey if you participated in grassroots state or federal advocacy that was brought to your attention by BPDD, if you follow them on social media and have shared content or connected with other people around the state virtually through Living Well Wednesdays or the Self-Determination YouTube Channel.
- People First activities
- COVID-19 activities
- Living Well activities
- Partners in Policy Making
- Youth Leadership Forum
- Sparks Grants
- Employment First Partner Grants
- Building Full Lives
- Partners with Business
- Take Your Legislator to Work
- Supported Decision Making
- Family-Led or Family Navigator Project
- Self-Determination Conference
- Employment First Conference
- Voting Trainings
- Disability Advocacy Day
In May, the Center for Medicare and Medicaid Services (CMS) released a final rule requiring vaccination education, access and reporting for the residents and staff of nursing facilities and intermediate care facilities for people with intellectual and developmental disabilities (ICF/IID). Last week, CMS sent a memo to the agencies in each state that are responsible for inspecting and accrediting ICFs/IID to provide detailed implementation guidelines for the new rule. This guidance provides information about the responsibilities of ICFS/IID under the new rule and may be helpful if as you counsel and educate residents of ICFs/IID, their families and caregivers and advocate for them with facilities..
The National Quality Forum (NQF) is seeking input on 14 quality measures for home- and community-based services (HCBS). These measures are a subset of the National Core Indicators for Intellectual and Developmental Disabilities HCBS Measures.
The measures, and the assessment of them by the NQF’s Patient Experience and Function Standing Committee, can be reviewed in the committee’s draft report. Comments may be submitted through the NQF website (requires registration) until Friday, September 17 at 6:00 PM ET. Any aspect of the report can be commented on including the scope of the measures, the quality of the measure development process, the importance of the measures, their utility in HCBS programs, etc.
Why this is important: Development of standardized measures of quality for HCBS has lagged behind development of similar measures for health care. That has hamstrung efforts to assess and improve the quality (and consistency of quality across states) of the services that make community living possible.
NQF endorsement is an independent validation of a measure of quality. It reflects scientific and evidence-based review, input from consumers and their families, and the perspectives of people throughout the health care and HCBS industries. That’s why input from the aging and disability networks, and of older adults and people with disabilities is so important.
For the first time in decades, Supplemental Security Income could get a much needed overhaul. This could mean growing the program benefits and increasing the asset limits. Earlier this month, the Senate approved a broad plan outlining priorities for the reconciliation bill, but advocates say details are still sketchy.
What's your story? Tell us a little bit about yourself.
Jordan is from Auburndale, Wisconsin and he just graduated from Auburndale High School. He will be attending Project Search in Marshfield this fall. He loves connecting with other advocates.
How are you involved with self-determination? Why did you join the SD Network?
Jordan joined the Self-Determination Network to meet others. “I want to meet other people that are like me and have the same needs and wants as me,” he tells us. Jordan is active in several different disability advocacy boards including Wisconsin Board for People with Developmental Disabilities, the Wisconsin Disability Vote Coalition, and the Wisconsin Supported Decision-Making Team. He has also attended many disability conferences, and is scheduled to present at a few upcoming events.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jordan is looking forward to speaking at the Self-Determination Conference this year. He does a lot of work with the Disability Vote Coalition to make sure that people have the right to vote and he's happy that the governor recently vetoed the bills that would have made it harder for people to vote.
What tip or resource would you like to share with people who want to be more self-determined?
Jordan explains that he got into doing more disability advocacy things about a year ago. He loves attending conferences and connecting with other self-advocates. He encourages others to get involved with various types of advocacy. He explains that one opportunity could lead to many others.
What are some of your hobbies?
Jordan is an avid sports fan and loves to watch Wisconsin sports. He also enjoys talking with family and friends over zoom about politics and current events. He likes discussing policy issues as well.
***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.
Self-Determination Network News:
August 2021
Connect | Share |Learn | http://sdnetworkwi.org/
Registration Now Open!
The 2021 Self-Determination Conference will be October 18-20. With the health and safety of participants in mind and with the current raise in COVID cases and variants, it has been decided that a virtual conference is the best option for 2021. You’re in for a great virtual conference experience again this year! There will be lots of interactive and networking opportunities. You'll receive a great conference kit and registration is FREE! Register today!
Calling Microbusiness Owners
There is a new way to exhibit at the Self-Determination Conference this year! The All Abilities Market is an online marketplace where microenterprises and artists can sell their products and/or services. You have the unique opportunity to join this marketplace and sell online, not only at the Self-Determination Conference but all year long! Applications are due September 1.
Exhibitor Applications Available
Applications to be an exhibitor at the conference are now being accepted. Organizations that support self-determination and self-directed supports are encouraged to apply. Applications are due September 1.
Diehard Award Nominations
Do you know someone who goes above and beyond to improve community supports for individuals with disabilities? Do they support self-determination? Nominate them for a Diehard Award in one of the following two categories: Professional Advocate or Self-Advocate/Grassroots Advocate. Nominations are due September 1.
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're shining the spotlight on Sydney. This animal–loving self-advocate keeps busy by participating in various advocacy organizations , and she encourages others to get involved in some sort of advocacy. Stop by this month's Member Spotlight to get to know Sydney.
Who should we shine the spotlight on next?
Voting Bills Update
Governor Evers recently vetoed bills that would have created new barriers and have impacted the voting rights of many people with disabilities. The Wisconsin Disability Vote Coalition released a new document that highlights stories of voters who these bills would have impacted. While these bills were paused for now, we encourage you to continue to reach out to your legislators and share how important it is to make voting accessible for everyone.
People First Wisconsin is Hiring!
People First Wisconsin is a statewide Self-Advocacy organization for people with disabilities. They help people speak up for themselves, share ideas, start local Self-Advocacy groups, and work together with advocates across Wisconsin on issues important to members to improve life for people with disabilities. Currently, they're accepting applications for a Office Manager and a Financial Manger. Learn more about these positions and find out how to apply by clicking here. Applications are being accepted until September 8.
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:
- SPARKS Grants: SPARKS grants are meant to give people with disabilities more social connections by participating in community activities, and they help provide inclusive programming that gives people more opportunities. Applications are due September 10.
- Input Needed on "No Surprise Billing" Rule: Surprise billing can occur when someone receives care from a provider outside of their insurance carrier’s network. This often occurs in emergency situations, when people do not have control over where they are taken for medical care. A new rule would implement requirements set in the No Surprises Act to establish protections against surprise billing. The public comment period closes September 7.
- The Importance of Web Accessibility: Most use the Internet on a daily basis. The opportunities that the Internet brings are endless. However, for people with visual impairments, these opportunities are significantly more limited. Learn why website accessibility is becoming more and more important.
- COVID Added to Disability Qualification List: Recently, the US Department of Justice and the US Department of Health and Human Services released guidance that explains that explains when “long COVID” may be a disability under the ADA, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. Learn about what this means.
- Fact Sheet: Late in July, we celebrated the 31st anniversary of the Americans with Disabilities Act (ADA). The Biden-Harris administration released a fact sheet about what they've done to ensure people with disabilities receive resources and are included in key administration proposals. Check it out.
- Report on AVs: The U.S. Access Board has released a summary report on its four-part series of virtual meetings on making autonomous vehicles (AVs) accessible to passengers with disabilities. Learn what the report reveals.
- Transit Training Opportunities: The National Center for Mobility Management recently announced some training opportunities for transit systems. Find out more about these opportunities.
- Website Accessibility Website: Recently, a baseline for testing accessibility of web content was developed. The criteria sets a minimum for testing accessibility of websites. Learn about what the criteria is.
- Accessible Tourist Attraction: A popular tourist attraction in Door County has recently become accessible to all visitors. Find out which attraction got renovated.
- Health Care Outreach Toolkit: The Aging and Disability Business Institute has developed a toolkit for community-based organizations to help conduct outreach to potential partners and craft effective messages. Learn what else is included in the kit.
- Tech Giant Launches Employment Program: Google recently announced it's starting a program to help hire more people with autism. Read more about how the program is setup.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Accessible Autonomous Vehicles (AVS): August 17, 1p.m. to 2:30p.m., Online
- Webinar: Universal Design In Mental Health For Individuals With Developmental Disabilities: August 17, 1p.m. to 3:30p.m., Online
- Webinar: Person-Centered Supports In Popular Culture: August 18, 12p.m. to 1:30p.m., Online
- Electronic Visit Verification: Hard Launch Update And Online Forum: August 26, 1:30p.m. to 3:30p.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.
People First Wisconsin is Hiring
Two positions open!
People First Wisconsin is a statewide Self-Advocacy organization for people with disabilities. By joining together in groups, individuals with disabilities learn to speak up for themselves, share ideas, friendships and information.
People First Wisconsin helps people with disabilities speak up for themselves, share ideas, start local Self-Advocacy groups, work together with advocates across Wisconsin on issues important to our members to improve life for people with disabilities.
Please send letter of interest and resume to:
Office Manager - Milwaukee
- Part-time: Approximately 15-20 hours per week
- Must be willing to work a blended schedule - both in-person and virtual
- Report directly to the Executive Director of People First Wisconsin
- Please see our website for a detailed job description.
http://www.peoplefirstwisconsin.org/employment-opportunities.html
Financial Manager
- Virtual position across Wisconsin
- Part-time: Approximately 15-20 hours per month
- Please see our website for a detailed job description.
http://www.peoplefirstwisconsin.org/employment-opportunities.html
Now accepting letters of interest and resume through September 8, 2021
Start Date Mid- September 2021