News
On June 1st, Ohio became the first state to offer ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their benefits). In Ohio, the accounts are known as "STABLE accounts." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life. STABLE accounts are open to both residents in Ohio as well as across the country.
ABLE NATIONAL RESOURCE CENTER: Tennessee Launches Country’s Second ABLE Program
By SD Network, 2016-07-05
On June 14th, Tennessee became the second state to offer ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their benefits). In Tennessee, the program is known as "ABLE TN." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life. These accounts are open to both residents in Tennessee as well as across the country.
Nebraska launched its program for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their benefits). In Nebraska, the program is known as "ENABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life. These accounts are open to both residents in Nebraska as well as across the country.
DISABILITY CONNECTION NEWSLETTER: 10 Things to Know about Summer Fun & Safety
By SD Network, 2016-07-05
Summertime is usually thought of as a time to get outdoors and enjoy the sun. Families often take vacations to theme parks and waterparks, people play sports, etc... For many people with disabilities, though, the summer season can present a host of challenge. Are parks accessible? How can I stay safe in the heat? The list goes on and on.
Here is a great list of things to keep in mind about summer fun and safety. There are a bunch of links to helpful resources included in the list.
The Americans with Disabilities Act (ADA) turns 26 at the end of July. The ADA improves lives of people with disabilities in many ways. This blog talks about some of them and discusses briefly how the Act was formed.
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.