News

This week, Joint Finance worked to vote on the Department of Health Services (DHS) budget requests.  Their budget is very important for the programs and services provided for people with disabilities throughout the state. While Joint Finance made some financial improvements to some of the programs and services, which we believe is in part to all the wonderful advocating performed by people with disabilities in WI, there still is work to be done. 

Read Survival Coalition's Statement

The Wisconsin Board for People with Developmental Disabilities (WI BPDD) is seeking up to eight (8) organizations to engage in community outreach activities that lead to increased community integrated employment for people with intellectual and developmental disabilities.  Anyone committed to expanding integrated employment in their community can apply, including people with disabilities, family members, service providers, and schools. 

Possible activities include hosting a community conversation about employment, presenting to employer groups such as the chamber of commerce, or connecting families new to community-based employment with families who are committed to it to share experiences and alleviate concerns.  Each grantee will receive up to $2,000 plus coaching and presentation materials to engage in outreach activities. 

To learn more and apply, see the Employment First Partner grant application.  Applications are due by 5:00 pm on August 16, 2019. 

Please contact Molly Cooney at 608-266-0266 or molly.cooney@wisconsin.gov with any questions

Meet Jenny.  This marketing extraordinaire found her passion to help the disability community while volunteering with the Fishing Has No Boundaries program.  This led her to taking a position with a nonprofit organization which assists people with disabilities to live as independently as possible.  She encourages people not to be afraid to repeat yourself when advocating for what you need and want.  We’re so fortunate to have Jenny as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

Jenny grew up in Madison and attended the University of Wisconsin – Madison. She has always been interested in marketing, and in the local nonprofits in the area. She volunteered with Olbrich Gardens for a while, interned at the Aldo Leopold Nature Center. In 2014, she joined the board of Fishing Has No Boundaries – Madison Chapter, where her passion for the disability community grew, and have recently been elected Co-Chair! A few years later, she was hired at Community Living Connections (CLC) in 2016. 

She explains that CLC is a nonprofit which supports individuals with intellectual/developmental disabilities, physical disabilities, and frail elders to live as independently as possible, in their own homes. They provide support that enables people to live in their own homes and participate in community life. They provide in home staff to help with planning, personal cares, medical support, finances, relationship building, etc…  She is the Development & Community Relations Manager.  She coordinates their communications such as the Facebook and Instagram accounts and eNewsletters, assists with recruitment, and manages their fundraising efforts.

How are you involved with self-determination? Why did you join the SD Network?

Jenny joined the SD Network when she started at CLC. She didn’t know about the network until she started working there.  “I’m glad I did, it is a great resource and I really appreciate getting the emails,” she says.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Jenny is thrilled that Community Living Connections is growing! They are SO exciting to be expanding their service area to support individuals who live in the communities of Beaver Dam and Platteville She explains that they want to help more people live independently in their own homes and self-directing their own lives, and they’re thrilled to be making that happen!

What tip or resource would you like to share with people who want to be more self-determined?

Jenny shares that in Marketing they say it takes someone seven times to hear the message, before they actually hear it, absorb it, and act upon it—so, don’t be afraid to repeat yourself! She explains that other people may not fully understand your message the way you mean it the first time around. “Advocate for yourself, repeat what you want and what you need, and say it in as many different ways as you can,” she exclaims!

What are some of your hobbies?  

Jenny loves to garden!  She and her husband bought a house in Oregon and she has been slowly growing the garden to be her little outdoor oasis. She’s a big reader, and is in a small book club with a few friends. She also loves camping and being outdoors--like walking through the Arboretum, or lying beside Devil’s Lake with a good book in hand. She says she doesn’t know how to fish, but every summer, her favorite weekend is in July with Fishing Has No Boundaries in Madison! “It is so much fun, and everyone who comes (both volunteers and participants) is so excited for a weekend of accessible fishing,” she says! 

***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.

“You don’t know what you don’t know.“  Most people have heard a similar saying before.  We hear people say you should always keep learning.  When we are younger, we often think we know everything we need to know about life.  As we age, though, we realize that there is so much more to learn.  Whether it’s learning something new about your favorite sports team, your city, your vehicle, your neighbor, a health condition, a financial resource, or just a fun fact about something silly, we continue to learn every day.  People with disabilities are no different—in fact, it sometimes seems like we are forced to find out more information and figure complicated situations out more than the average person.

My parents and I used to consider ourselves pretty educated people when it came to navigating the whole “disability system.”  My mom worked in the special education field for over 40 years, my sister is an occupational therapist, and I’ve been pretty active in disability advocacy for a few years now.  One would think given that combination we’d have a pretty good handle on how everything works and what resources are available.  However, that couldn’t be further from reality. 

In recent months, we have found ourselves wide-eyed with new information, but yet having to go to great lengths to find other information.  It’s not just about one thing either—it’s multiple issues.  Obviously, we had to learn and the long-term care system years ago even before I graduated college.  My parents and I met the local Aging and Disability Resource Center (ADRC) where we were explained and given the choice of two options—IRIS or Family Care. IRIS sounded like the best option for me.  I vaguely remember picking my consultant, but I don’t think it was ever explained that I had a choice of what IRIS Consultant Agency and Fiscal Employment Agency I wanted.  I’m almost embarrassed to admit this, but it was well over five years after I started in IRIS before I realized I had those options.  I may have missed the boat on that, but information wasn’t readily available either.  Then, when care issues started to arise years ago, my consultant gave us all the resources and explained all she could, but there wasn’t Information easily available.  Now, yes, I understand that I choose to self-direct everything and that’s part of it; however, it’s really had to do without knowing what’s available.  Furthermore, last fall, when I just wanted to learn more information about Family Care and ask questions, the ADRC wouldn’t even meet with me unless I enrolled.

Long-term care is just one example of where I find myself still learning the hoops.  A few months ago, I visited my Independent Living Center.  They have an accessible model house that has all sorts of assistive devices, so I wanted to see if they had anything I could benefit from.  It turns out I already have a lot of the things they had, but I was talking with the assistive technology specialist about accessing my computer.  He mentioned that I may want to try eye gaze.  I had tried it many years ago and didn’t like it, but he said technology has come a long ways and that I may want to try it.  He explained I could get it funded through the Telecommunications Equipment Purchase Program (TEPP).  I had never heard of it before.  It’s a program through Wisconsin Public Service that funds assistive telecommunications equipment for people with disabilities.  The rep from the eye gaze company came and did a demo a few months ago.  I was able to try it, and I was able to successfully use it.  It was actually really cool—I will be able to control my computer with just my eyes.  We’re just waiting for my TEPP application to be processed and then I’ll be getting the equipment.  Not knowing about TEPP, I’ve probably missed out on some assistive technology equipment that would have made life easier.  Again, I don’t know how people are supposed to know about these programs.

Health care is another area where information seems scarce.  As I’ve explained in a previous entry, I started seeing a rehabilitation doctor a few months ago.  My neuro team was shocked when I told them I didn’t have one.  The rehab doctor sort of oversees my medical care.  I left the first appointment feeling like this should have happened years ago—not because I’m thrilled with all these extra appointments I’ve had, but because it may have been helpful in treating or preventing some of the issues I had.   My sister later explained that rehab doctors are a relatively new concept, but I feel like my regular doctor should have referred me.  Again, how are people supposed to know these are available?

Recently, my parents and I have started trying to figure out how my benefits will change when their benefits change.  We’ve found out that there’s a lot of confusion about this and people are being very misinformed.  After my parents made several phone calls and I talked to friends with similar circumstances, we’ve kind of have an idea of what needs to happen.  There isn’t a person that guides you through it.

It’d be a huge understatement to say we’ve learned a lot in the last few years.  There’s truly not a road map on this journey.  I’m truly blessed that my parents and I have the cognitive capability to navigate this curvy road together.  I’ll continue to do everything in my power to help others do so as well! 

***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 goal of The John A. Hartford Foundation Business Innovation Award is to highlight the successes of community-based organizations (CBOs) that are partnering with health care entities, such as health systems and health plans, and spur the replication of these partnerships nationwide.

The annual award recognizes one or more CBOs that have made significant strides in partnering with health care entities to improve the quality of life for older adults and/or persons with disabilities. Awardees demonstrate the pursuit of bold, transformative initiatives designed to integrate health care and long-term services and supports.

Eligibility: Nominations from an array of community-based aging and disability organizations are encouraged. Eligible recipients include, but are not limited to, Area Agencies on Aging, Centers for Independent Living, faith-based organizations, and other community-based service providers. Organizations may self-nominate.

Nomination Process: For consideration for the 2019 Business Innovation Awards, please complete the nomination form in its entirety by June 14, 2019. Incomplete forms will not be considered. If you have questions, email businessinstitute@n4a.org.

Selection Process: Awardees are chosen by a review committee of representatives from foundations, health care entities, and CBOs. The review committee will select one winner and up to two runners-up. Awardees will be announced at n4a’s 44^th Annual Conference in New Orleans, July 27-31, 2019. All awardees will receive a plaque and first place winner will receive a monetary award of up to $5,000.

Nominations due Friday, June 14, 2019

Visit the nomination webpage

The Department of Labor, Office of Disability Employment Policy (ODEP) is inviting stakeholders to participate in their Section 14(c) National Online Dialogue to gather and consider perspectives on the present and future of disability employment, including the roles of subminimum wages and competitive integrated employment. ODEP asks you to share your ideas, individual stories, and personal experiences illustrating the impact of Section 14(c) on the employment of people with disabilities.

Since 1938, Section 14(c) of the Fair Labor Standards Act has authorized employers to pay wages that are less than the Federal minimum wage to workers who have disabilities for the work being performed, after receiving a special wage certificate from Department of Labor’s Wage and Hour Division.

The purpose of this National Online Dialogue is to capture perspectives about Section 14(c) based on individual input from those "on the ground," including a wide range of stakeholders. The information gathered during this important online dialogue will provide the U.S. Department of Labor with an opportunity to better understand the current landscape, as well as the potential future of Section 14(c).

Three main topics within the dialogue are: 

• Use of Section 14(c) and observed trends
• Experiences transitioning from the use of Section 14(c) certificates
• Vision for the future of work and workplaces; the landscape over the next five to ten years

This online event is open to the general public. ODEP strongly encourages people with disabilities, their families, providers, disability organizations, employers, researchers, and other stakeholders who have experience with, or opinions about, Section 14(c) to share their perspectives and ideas for the future. INPUT IS DUE BY JUNE 14, 2019.

A week before the official start of the 2019 hurricane season, the National Council on Disability (NCD)—an independent federal agency—released its latest report, titled, Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters.  The NCD examined available data from several major storms and disasters and found that people with disabilities are frequently institutionalized during and after disasters due to conflicting federal guidance; a lack of equal access to emergency and disaster-related programs and services; and a lack of compliance with federal law..

Read report

The new "conscience rule" which allows health care providers more leverage to decline care that they disagree with has disability advocates worried.  The U.S. Department of Health and Human Services finalized an updated “conscience rule” that protects medical staff and health care entities from having to provide, refer to, or pay for services such as abortion, sterilization or assisted suicide.  Advocates feel that the implications are much more extensive because the rule says that an individual can’t be required to “perform or assist” in any part of a “health service program” if contrary to the person’s religious beliefs or moral convictions. 

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Federal officials are looking closer at how money is being spent in ABLE accounts.  The U.S. Department of Housing and Urban Development recently issued guidance to public housing officials across the country clarifying how they should treat funds accrued in ABLE accounts.

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