News
SPARKS Grants are designed to organize local grassroots groups that identify and make changes in their communities resulting in a positive impact on the lives of people with disabilities.
Grassroots community organizing means groups working for positive community change for individuals with disabilities on issues that are important to them. SPARKS Grants are available to people with developmental disabilities and family members in Wisconsin.
Activities funded by SPARKS Grants include organizing a local People First chapter; forming a local social justice or civic group that includes people with and without disabilities (this could be a school group); providing for local community advocacy (e.g., developing an inclusive park or accessible garden, expanding community employment opportunities for people with disabilities)
Apply for the Wisconsin Board for People with Developmental Disabilities (WI-BPDD) SPARKS Grants. These Grants provide you with funding up to $3,000, technical assistance, and tools/resources to support your outreach activities.
If you are interested you need to complete an SPARKS Application (if link does not work, cut and paste this URL into browser: http://www.wi-bpdd.org/docs/2016/2016-17-SPARKS-Grant-Application.pdf
Send completed application to:
SPARKS Grant c/o WI-BPDD 101 East Wilson Street Room 219 Madison, WI 53703
The deadline for submission of applications is Friday, July 29th, 2016. Individuals (or groups) with I/DD who have diverse identities and /or individuals that are underserved are encouraged to apply.
If you have any questions contact: John Shaw at 608-266-7707 or john1.shaw@wisconsin.gov
You can also contact Deb Wisniewski (Sparks Grants Coordinator) at scgwis@gmail.com or leave a comment below.
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Changes to Wisconsin Long-Term Care: What’s Next?
On Thursday June 9th, the Wisconsin Department of Health Services contacted the co-chairs of Joint Finance to withdraw its Concept Plan on Family Care/IRIS 2.0. Participant input was said to be major reason for withdrawing the plan from consideration. Changes to Long-Term Care remain in law, so this does not mean there will be no changes; however, at this point, it is unclear what the changes and timeline will be. Be sure to stay up to date on the latest developments on our Long-Term Care Redesign page.
It's with deep sadness that we tell you that Wisconsin DHS Secretary Kitty Rhoades recently passed away. InControl Wisconsin wants to express its deepest sympathies and condolences to her family and friends during this time.
You are Invited to Join the Conversation!
We all have questions that we’re looking for advice on. The Network is a great way to tap into the ideas and experiences of other people - the members of the network. So if you’d like to post a question, we can all share our thoughts with you. This month, Stacy is tackling the challenge of hiring her own staff and she’d like to hear from you. Join the conversation!
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 shine the spotlight on Wanda Vielliex. Thanks to being able to self-direct her own supports, she's able to fulfill her passion of helping people. This volunteer extraordinaire is active in many clubs and organizations in her community. Stop by this month's Member Spotlight to learn more about Wanda!
Who should we shine the Spotlight on next?
Take five minutes to check out what's happening on the Self-Determination Network:
- Final Overtime Rule: Read about how the final overtime rule for caretakers may impact many people with disabilities.
- Travel App: Learn about a new app that helps people with disabilities find accessible hotels.
- Accessible Dollar Bills: Find out about how advocates are pushing the U.S. Department of Treasury to make the next dollar bill accessible.
- Community Living: Read about how a study found that many families of those with disabilities who had to transition from institutions to community living are happy with the results.
- Web-Captioning Survey: Learn and find out how you can voice your opinion about a proposal that assesses the monetary value of captioning web content for people with hearing impairments.
- Be Inspired: Read about a high school athlete who doesn't let having a disability hold him back.
- Transportation Survey: Here's an opportunity to participate in a survey about transportation for people with disabilities.
- Benefits Calculator: Learn about a neat tool you can use to estimate your Social Security benefits.
- Parent Support Needed: A support group is looking for parents of children with special needs to support other parents going through similar experiences.
In this month's entry, Stacy discusses her recent care challenges and how she's tackling them. We encourage you to ask her questions and/or share your experiences as well.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Accessible Pontoon Boat Rides: June 1st-September 30th, Tenney Park, Madison WI
- 2016 Transformation Conference: June 28th-30th, Hilton Alexandria Old Town, Alexandria VA
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.
P2P Needs Support Parents Who Have a Child with Seizure Disorders, Autism, Mental Health Challenges or Down syndrome
By SD Network, 2016-06-14
Parent to Parent of Wisconsin - www.p2pwi.org - provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience and who knows firsthand about the feelings and realities that come with having a child with special needs.
P2P has had an increase in the number of calls looking for the support of another family who has the experience of a child who has seizures, a mental health condition, autism, families who have young children with Down syndrome as well as other conditions.
If you are interested in learning more about how to become a support parent we would like to invite you to attend a support parent training.
For more information, please call Robin at 715.361.2934 or email: Get-Connected@p2pwi.org
Everyone has stress. There are multiple causes of stress. Stress is a normal part of life and is even healthy to some extent. Like everyone else, people with disabilities have stress. In fact, I’d even bet we have more stress than the average person. For me, personally, the past nine months have been very stressful. Unlike many of my “normal” friends, I’m not worried about things like getting engaged, planning a wedding, having babies, or buying a house. Instead, I’m worried about things like if my caretaker is going to show up to help me out of bed in the morning, help me use the restroom, or feed me meals.
Back in October, I wrote an entry about how I had to change care agencies because of the rule prohibiting people to hire third-party vendors through IRIS Self-Directed Personal Care (SDPC). At the time, for many reasons, I didn’t want to take on the responsibility of hiring and scheduling my own staff; therefore, I found and switched to an agency that billed Medical Assistance. Like I said in my previous entry, it was quite an adjustment because I had to get used to and train all new people. When I wrote that entry, I was trying to be patient and give the agency time to figure things out.
In the nine months I had the agency, nothing has changed. It was a complete nightmare. For obvious reasons, I’m not going to disclose the name of the agency, but I’ve just had a multitude of problems with them. From staff being late and not showing up for shifts, to having inadequate staff (on multiple levels), to not having a functional backup or on-call system… the list goes on and on.
In winter, things got so ridiculous one weekend that I did something I’ve never done in all of the years I’ve had care agencies. I asked my parents to come get me because I couldn’t handle it anymore—I was so frustrated! Admittedly, I lost my patience. After that, the agency promised that things would change, but really never did. In fact, things got worse. In addition to the issues I listed above, I had problems with theft and having untrained staff come in. My parents and I tried to work with the agency to try to improve things by offering to do trainings, etc…, but nothing seemed to help.
By the end of March, I was down to have one person doing all of my shifts. I have 28 personal care shifts and two supportive home care shifts per week. It’s crazy to have one person doing all of that. It was unhealthy for both the staff and I. Plus, I had absolutely no backup staff. The agency kept telling me that they were working on hiring more staff, but nothing ever came of it.
I began researching different options. Basically, I found out my choices were very limited as there are very few care agencies in Oshkosh that bill Medical Assistance. The agencies that did were known to be even worse than the one I had. I even looked into the Managed Care Option (MCO) to see if I went on that (instead of IRIS) if I could go back to my previous care agency, but, as it turns out, that agency isn’t listed as a “personal care” agency under the MCO.
I was very hesitant about the hiring my own staff because I wasn’t too keen on all the responsibility that comes with it. However, after talking with some of my friends who have been doing it for years, I decided to give it a try. I wrote up an ad and posted it on Facebook a few times. Friends shared it on their pages, and, amazingly, I got quite a few responses. My mom helped me make some calls one morning, and we were able fill my whole summer schedule in a matter of hours. I then met with my IRIS consultant and nurse to get the paperwork started. I also met with each employee to do paperwork. I’ve had a few hiccups with people (former agency staff) not passing the background check, but, again with some quick Facebook posting, I was able to find some new people. I realize that hiring and scheduling people is going to be on-going responsibilities in my life now, but people tell me I’ll have much better luck. Only time will tell, but I’m excited to start this new chapter of my life!
So, while I may not stress about the same things that most of my peers do, I certainly do have stress. I’ve realized that stress about finding care staff is going to be part of my life. I will do whatever it takes to live as independently as possible!
***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.
WISCONSIN STATE JOURNAL: Health Services Department withdraws request for changes to state Medicaid programs
By SD Network, 2016-06-10
On Thursday June 9th, the Wisconsin Department of Health Services contacted the co-chairs of Joint Finance to withdraw its Concept Plan on Family Care/IRIS 2.0 DHS Secretary Kitty Rhoades cited participant input as a major reason for withdrawing the plan from consideration.
For many people who receive Social Security Disability Benefits, it's often a guessing game each month as to what the amount will be. While each person's situation will be different, this article talks about a tool that may help you approximate how much you could receive.
Meet Wanda Viellieux. After finding out she could make her better self-direct her supports and services through IRIS, she was better able to fulfill her passion of volunteering. She believes that everyone has the right to be involved in making decisions and is a firm believer in self-determination. We’re so fortunate to have as a member of the Network!
How are you involved with self-determination? Why did you join the SD Network?
Wanda decided to transfer from Family Care to IRIS because she was not getting what she needed. She wanted to make her own choices about who she wanted to hire for the services she needed. “I’ve been very happy as the decisions I have made; they have fulfilled what I absolutely needed,” Wanda said. She joined the Network because she wanted to keep updated on the latest news affecting Self-Determination. She has wanted to attend conferences, but barriers such as distance, transportation and finances have kept her from being able to do that. “The unfortunate part of self-determination is that I live in a more rural part of the state and some services I need are more scarce,” she pointed out.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Wanda looks to the Self-Determination Network to get the latest news about the programs and services that she uses. She has followed the 2017 Long-Term Care changes especially close. The Network “gave me the information I needed to contact state legislative people to advocate for myself and others who may be in my situation,” Wanda said.
What tip or resource would you like to share with people who want to be more self-determined?
Wanda encourages people to be determined and do not let other people tell you otherwise. Everyone has the right to be involved in their own care. She said, “if you believe you are not getting the care you should be getting, go ahead and make other appropriate contacts to get the care you need.” Wanda suggests that people get involved in learning how they can be his/her own “best advocate” and also knowing when they need to ask for someone they can trust to advocate on their behalf.
What message would you like to share with the members of the SD Network?
Wanda wants people to know that having disabilities or limitations in some areas of your life does not make you less dignified or less important than anyone else. She said, “we all have differing abilities which makes life much more interesting and fun. Sometimes it can get frustrating and depressing, keep believing in yourself and what your goals are."
What are some of your hobbies?
Self-directing my services helps Wanda remain an active part of her community. She doesn’t have much time for hobbies as she’s an avid volunteer. She has been a disaster volunteer for the American Red Cross since 1997, and her current focus is on disaster preparedness. She’s also a VFW Auxiliary lifetime member. She’s very active in supporting our veterans as patriotic instructor where she goes into schools and community youth groups to do flag programs, and to recognize how they support our veterans. In addition to all of that, she’s involved in her church and is a presenter to youth and adults. “These three areas of my volunteer work are also where my passion in life is. It is so fulfilling when you can find your passion in something you love to do. That’s what enriches my life so much more,” Wanda said.
***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.
We thank the Great Lakes ADA Center for providing us with the following information about an opportunity to participate in a survey about transportation for people with disabilities.
We would like to invite you to participate in a national survey titled, Transportation Access and Experiences, which is designed to improve understanding of accessibility of public transportation for people with disabilities. This survey is being conducted by the ADA Participation Action Research Consortium (ADA-PARC), a collaborative research project of ADA Regional Centers (PIs: Lex Frieden and Joy Hammel). This project focuses on community living, community participation & work/economic participation disparities of people with disabilities (For more information, visit the website:www.adaparc.org). We would like to improve our understanding on transportation access of people with disabilities and use this information to make improvements at regional and national levels.
We are very interested in receiving as many responses as possible from people with disabilities based on their personal experiences with public transportation. The results will serve as crucial evidence to support improvements to accessible transportation.
Please use the link below to access and complete the survey. The online survey can be completed in English or Spanish. This is the second round of data collection for this survey, so if you have already completed it, please do not complete the survey again.
If you would like to complete the survey by phone in English, please contact the research team at 312-996-9655. If you would like to complete the survey by phone in Spanish, please contact Ancel Montenelli at 312-413-1439. Please mention that you are calling about the ADA transportation survey.
If you have any questions or comments regarding this survey, please contact Jill Bezyak from the Rocky Mountain ADA Center at jill.bezyak@unco.edu.
WKOW: Wisconsin Heights/Barneveld track star doesn't let disability hold him back
By SD Network, 2016-06-01
For Wisconsin Heights/Barnveld junior Brenden Ojibway, spring is about Track and Field. Despite using a wheelchair, he competes in the 400 meter, 800 meter, and shot put. Thanks to the WIAA incorporating wheelchair athletics, Brenden has the chance to compete.
The Autism Society of Wisconsin is conducting a survey for individuals with autism, parents/caregivers, and professionals affected by autism. The survey is an opportunity for you and others to share your experiences and thoughts to influence our programs and legislative priorities. The survey will be repeated in the future so we can track how attitudes and experiences change over time. A report with survey results will be published later this year.
The survey takes approximately 10 - 20 minutes to complete. Those who enter their contact information at the end will be entered to win a $50 Amazon Gift Card. The survey will close on June 3rd.
Please consider taking the survey and sharing with others!