News
What's your story? Tell us a little bit about yourself.
Hunter is 26 years old. He was born three months premature in Milwaukee, WI. He has Cerebral Palsy and is considered a quadriplegic. He uses a wheelchair to get around and has a visual perception deficit. He has a brother adopted from Vietnam who has a hearing impairment and an intellectual disability.
Currently, Hunter lives in Wausau, WI in his own apartment with his cat, Sully. He lives independently with the help of a team of caregivers, including his mom. He uses an emergency alert system for added safety.
Hunter is the owner and author of www.comerollwithme.com. He has been working hard to become a professional blogger and advocate for individuals with disabilities. He would like to expand, becoming a public speaker soon.
How are you involved with self-determination? Why did you join the SD Network?
Hunter explains that his IRIS consultant, Jennifer, told him about the Self-Determination Conference in Wisconsin Dells this past October. He went as a vendor, promoting his blog and selling “Super Power” T-shirts. He wanted to also learn about others with disabilities to make him a better advocate.
Hunter lives in a building with other individuals with disabilities, but they are all much older than I am. He says the conference opened the door for him to meet others his age with disabilities. “It reminded me that I am not alone. I connected with some incredible people,” he explained. He joined the SD Network to continue connecting with other individuals with disabilities.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Becoming a member of the SD Network is exciting for Hunter! “I am hoping to meet new people and develop friendships,” he says.
Professionally, Hunter excited to have Virginia and Scott Steuck join the Come Roll With Me team. They will be helping him with marketing and expanding his reach. He’s excited for the growth and expansion of his blog and website.
What tip or resource would you like to share with people who want to be more self-determined?
Hunter explains that even though it may take a while, continue to look ahead. Being independent takes self-determination. However, it is a process. If you are working toward a goal, you are a success! Slow and steady wins the race. Obstacles are a part of living with a disability. Don’t let frustration cloud your view. Take a step back and figure out a strategy to make things fall into place. “Most importantly, never EVER give up,” he exclaims!
What are some of your hobbies?
In his free time, Hunter can be found on his computer or in front of his PS4. He also loves watching sports, including football, baseball, and wrestling. In the summer, he can be found at Athletic Field cheering on the Woodchucks. He also loves exploring new places and pushing his comfort zone with new adventures. Last year, he went water skiing and also rode on the back of a motorcycle!
***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.
DISABILITY SCOOP: Bill Would Prohibit Waiting Lists For Community-Based Services
By SD Network, 2019-01-30
A group of parents who have adult children with disabilities is teaming up to develop housing for their children. The parents of Home of Our Own have spent the past six years developing a 40-unit apartment complex in New Glarus, where their children can live on their own among friends and neighbors. A quarter of the apartments will be designed with special accommodations to meet the disability needs of their children. The rest will be offered for those in need of affordable, workforce housing.
The U.S. Access Board seeks Accessibility Specialists (GS 9/11/12) to serve in its Office of Technical and Information Services as indicated in vacancy announcements on the USAJobs.gov website. Chosen candidates will be responsible for providing technical assistance and training to the public on accessibility standards for buildings and facilities issued under the Americans with Disabilities Act (ADA) and the Architectural Barriers Act (ABA) and new Access Board standards for medical diagnostic equipment. They also will assist in preparing published guidance on these standards and in the periodic review and update of the standards. Several candidates may be selected.
Current or former federal employees who qualify as status candidates, candidates eligible under the Veterans Employment Opportunity Act, the Career Transition Assistance Plan, or the Interagency Career Transition Assistance Plan, and candidates eligible for special hiring authorities (e.g., Schedule A appointment for persons with disabilities, or covered by an Interchange Agreement) or who are eligible for Veterans' Recruitment Appointment (GS-9 and GS-11 only), should respond to Vacancy Announcement 19-AB-1. All other candidates should respond to Vacancy Announcement 19-AB-2-P. Applications are due February 19, 2019.
For further information, contact the Applicant Call Center at (304) 480-7300 or by email at ACCESSBOARDINQUIRIES@fiscal.treasury.gov.
January 2019
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Disability Advocacy Day 2019
Registration is now open for Disability Advocacy Day 2019! Join fellow advocates on Wednesday March 20th in Madison to let your voice be heard. Disability Advocacy Day is designed to connect you with your legislators so you can talk about issues that matter to you. You are the expert in sharing how legislative policies affect people with disabilities in their everyday lives. The day starts with a briefing of issues you and your fellow constituents want to discuss with your legislators and after lunch the whole group heads to the capitol for their legislative meetings. Registration closes March 8th. Register today!
Take five minutes to check out what's happening on the Self-Determination Network:
- SCI Community Input Needed: Check out the great opportunity Kurt posted about for people with spinal cord injuries to give input to influence research.
- Adaptive Community Approach Program: Kurt posted links about the Adaptive Community Approach Program. Learn about what this awesome program offers for people with disabilities.
- Youth Leadership Program: The Wisconsin Youth Leadership Forum (YLF) is a week-long leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities. Applications are due March 15th.
- New ABLE Account Rules: With a change taking effect this year, individuals with disabilities can save more money than ever before without losing out on Social Security, Medicaid and other government benefits. Find out how much people can put in an account.
- Advancing Person-Centered Practices and Systems: The Administration for Community Living and the Centers for Medicare & Medicaid Services recently announce the launch of the National Center on Advancing Person-Centered Practices and Systems. Read about what the center will provide.
- Woe in Services: According to a new report, more people are on waiting lists, fewer are competitively employed and access to services remains uneven. Learn what causes such disparities.
- Accommodating Water Park: A water park has become an official certified autism center. Find out what the park is doing to accommodate people with autism.
- Family Caregiver Support Report: The Administration for Community Living has released documents about family caregiving. Read about study findings and statistics.
- Survey Opportunity for People with Visual Impairments: T-Mobile is developing a new television service and has begun to implement accessibility features for the individuals with visual disabilities. They are looking for input from adults with visual disabilities.
- Research Opportunity for Adults who Use Wheelchairs: A nationally recognized rehabilitation facility is conducting a study on falls and fear of falling in people who use wheelchairs. They're looking for people to help by taking a survey.
- Parents of Adult Children Find Support from Each Other: Many parents who have adult children with disabilities often worry about the future. Parents in this situations get together monthly to brainstorm solutions. Read about the group.
- Government Shutdown Impact: People with disabilities felt the effects of the country's longest government shutdown ever. Learn about how it impacted many people.
- Push to Remove the 'R-Word': Two Wisconsin senators are working on legislation to remove the term "mental retardation" and all its derivatives from state code and replace it with the words "intellectual disability." Read about why the senators are doing this.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: ABLE Accounts And Special Needs Trusts: January 31st, 1p.m. to 2:30p.m., Online
- Adaptive Bike Fair: January 31st to February 3rd, Emerys, Milwaukee WI
- Long Term Care Advocacy Team: February 12th, 2:30p.m. to 3:30p.m., Independence First, Milwaukee WI
- Webinar: Falls Prevention For Older Adults: February 13th, 11a.m to 12:30p.m., Online
- Webinar: The ADA, Businesses And Barrier Removal: What Are The Requirements?: February 19th, 1p.m. to 2:30p.m., Online
- Advocacy For Change: March 13th, 8:30a.m. to 4:30p.m., Concourse Hotel, Madison WI
- Disability Advocacy Day: March 20th, 9:30a.m. to 3:30p.m., Monona Terrence, Madison 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.
Ever feel like you’re on an uphill battle with no clear end in sight? I think everybody has at some point in their life. Whether it’s with health issues, relationship issues, financial issues, work issues, or a combination of things, most people face some kind of adversity during life. I like Robin Roberts’ quote: “Everybody has something.” Although it may seem like it, nobody has a perfect life. Every single person has some adversity. Obviously, there are many different perceptions when it comes to the challenges people face. What may be a major crisis to one person, might seem like a small bump in the road to somebody else. It’s often assumed that people with disabilities face more challenges than the average person. Regardless of what the issue may be, facing adversity is part of life.
Why am I writing another entry about dealing with adversity? It seems like it’s often the general topic of most of my articles, right? Yes, I’m well aware of that; it’s my hope that I’m helping spread awareness by sharing my perspective and experiences. I feel that facing adversity and sharing how one perseveres through it is a key part of advocacy.
The past two months, I’ve faced my fair share of challenges. In past entries, I’ve discussed how my parents and I were looking into different care options. Long story short, in the beginning of November, we thought we had found a home care agency that billed Medical Assistance that could meet my needs. My mom and I met with the nurse in mid-November and did the initial assessment. Many calls and emails with the scheduler were done, and it was eventually decided that their workers would shadow my Self-Directed Personal Care (SDPC) workers the first two weeks of December and then the agency would take over the first week of January. I had a planned surgery scheduled in mid-December and had planned to be at my parents a few weeks recovering over the holiday season. I thought things were lining up just perfectly. I’d end with my SDPC workers (besides my parents) right before surgery, have the surgery, recover and enjoy the holidays at my parents, and start with the agency in the new year.
In late November, I had to let my SDPC workers know that people from an agency would be coming in to shadow and that the agency would be taking over in January. It was really hard making that announcement. I felt absolutely horrible having to let them go, but I was hopeful that this would be the answer to my situation. December came and the agency started shadowing. They had four or five people come in during various shifts. Admittedly, it was a little awkward having the agency workers observe the people who were losing their jobs, but the workers understood and made the best of the situation. It’s never easy having new people take care of you, but training was going ok until the second week in someone from the agency said, “we can’t give meds, so I don’t know what they’re going to do.” Wait! What? I take multiple medications each morning. Obviously, I can tell people which medication I need, but I physically am not able to put pills in my mouth. I had my mom call the office right away and she left a message asking about it. A few hours I received an email saying that was correct—their workers cannot give medication. They wondered if I could have somebody come in and do meds each morning before the morning shift. That totally defeats the purpose of having an agency! With other agencies I’ve had, they’ve had a nurse set up the meds in pill containers for two-week time periods, and then the workers could give me pills out of the container rather than from the med bottles; however, this agency didn’t even allow that. There was some major miscommunication along the way because when mom and I initially met with the nurse, she physically had the pill bottles in her hand and wrote down each medication, but never said their workers couldn’t give meds (and we discussed how I have to have somebody feed me). Furthermore, what’s crazy is that med administration is listed as a class they offer for workers on their website! After I got the email, I called my parents freaking out—what were we going to do? I had given the four or five SDPC notice and hadn’t hired anyone new in months anticipating switching to an agency. Luckily, my great parents drove up and we devised a plan. I had no choice, but to stay on SDPC and keep hiring my own workers. Thankfully, about three of my workers were still interested in working with me. We’re back to hiring people and scrambling to fill shifts, but it’s our only option at this point. This not only affects me, it also affects my parents. Especially with the cold weather here, being newly retired, they desperately want to travel; however, with the uncertainty of my care situation, they can’t leave the state. It’s very frustrating for both them and I.
In addition to the care debacle, I’ve had some unforeseen health issues arise. The planned surgery in December to replace my Baclofen pump (which drips a muscle relaxant into my spinal fluid) went fine, but a few weeks later, my muscle spasticity went haywire. After trips to the ER and multiple tests, it was thought I needed another surgery to correct the pump. They went in and checked everything out; it turns out everything looked fine. They aren’t sure what caused the drastic increase in spasticity, but now I have steps I can take to help decrease it when it happens. While I’m glad we have solutions to help with the issue, it’s just one more side effect of cerebral palsy to deal with.
My wish for a fresh start in 2019 didn’t happen like I had hoped. In fact, its been just the opposite. Life throws people all different kinds of curves. People deal with challenges in many different ways; some good, some bad. People’s true colors show when they’re faced with adversity. Although, very hard to do at times, when we’re faced with unforeseen challenges, we must put one foot in front of the other and persevere.
***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.
Two Wisconsin senators are working on legislation to remove the term "mental retardation" and all its derivatives from state code and replace it with the words "intellectual disability." The bill mirrors legislation former Gov. Scott Walker signed in 2012 that removed "mental retardation" from state statute.
DISABILITY SCOOP: Government Shutdown Takes Toll On People With Disabilities
By SD Network, 2019-01-23
People with disabilities are feeling the effects of the country's longest government shutdown ever. Although some of the primary agencies that assist people with disabilities remain open, things such as subsidized housing and food stamps are affected. Since the federal government is one of the largest employers people with disabilities, many people are out of work as well. Things such as caregiver background checks are being put on hold also.
WISCONSIN PUBLIC RADIO: Older Adults Caring For Adult Children With Disabilities Find Connections Amid Uncertainty
By SD Network, 2019-01-23
Many parents who have adult children with disabilities often worry about the future. What's going to happen to the individual when they no longer care for him/her? A group of parents in Milwaukee meet monthly to discuss these fears and brainstorm solutions together.
- Is at least 18 years old
- Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months.
- Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
- Has a computer with internet access.
- Is able to read and understand English.