Meet InControl Wisconsin board member, Terry Lynch.  Having worked in the disability field for many years, he has had a vital role in supporting independent living and self-determination.  The extensive list of advocacy boards he has served on is a testament to his dedication to the disability community.  When he’s not busy doing advocacy work, you’ll find him at a local coffee shop conversing with others.  We’re so lucky to have him as a part of InControl Wisconsin.

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

Terry has been promoting the independent living cause since 1977, when he served as Assistant to the Director of the White House Conference on Individuals with Disabilities. He then managed a federal government disability rights program and had a key role in the establishment of the National Disability Rights Network. Terry returned to Wisconsin in 1985 to begin his consulting and speaking business.  His writing and his work in the self-determination movement are founded on this illuminating personal experience, as well as his work with other families. Wisconsin Governor Jim Doyle appointed Terry to the state’s Board on Aging and Long-term Care in 2006 and to its Quality Home Care Authority Board in 2009. Terry is a Board member of a national advocacy organization dedicated to elevating the status and wages of direct care workers and is engaged in shaping policy advocacy for the Alzheimer’s Association of Southeastern Wisconsin.  He assists Connections with issues related to effective support  for older adults participating in IRIS. He also is a founding member of InControl Wisconsin.

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

Terry shared that InControl Wisconsin recently held its fifth well-regarded conference on self-determination and aging. He explained that the conference was enriched by Simon Duffy, the founder of In Control in the United Kingdom, who traveled to Wisconsin to spend several days with a number of organizations, concluding with an inspirational keynote presentation at the conference-- and highlighting the pioneering aspect of Wisconsin's contribution to the advancement of empowered aging.   

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

A tip Terry would like to share is that "Dementia"-- a prominent medical issue among older adults-- is not a diagnosis.  He explains that it refers to symptoms, such as memory loss and confusion.  “Alzheimer's, of course, is a frequent cause, but dementia can be caused by other, treatable, medical problems, such as alcohol abuse, depression, vitamin deficiency and adverse reactions to medications,” he says. 

What message would you like to share with the members of the SD Network?

Terry’s definition of self-determination is based on his experiences with his mother.  He defines self-determination as, "the most control possible over the best possible life."  He explains that this was their realistic "dream" and he believes it is what we all should be striving for in our support for people of all ages in Wisconsin's long-term care programs.   

What are some of your hobbies?

Terry loves spending time in the greatest meeting place he has known: a popular Racine coffee shop which attracts people of all ages. He shares that it is a remarkable source of community support for older adults (such as himself he jokes) and others with difficulty living life without some additional assistance.  “And its coffee and pastry are superb,” he adds.

***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.

People who receive Social Security Disability Insurance for two years become eligible for Medicare. Many of these people have mental illnesses. Over the past 12 years, Medicare has improved its coverage for people with mental illnesses by covering most antipsychotic and antidepressant medications. The Affordable Care Act expanded Medicare's coverage to include important therapies to keep people with mental illnesses from needing in-patient treatment.  However, there are many problems with Medicare's coverage for people with mental illnesses. In 2008, Congress passed the Mental Health Parity and Addiction Equity Act. This made insurance companies provide the same level of care for mental illnesses as all health issues, but Medicare does not have to follow this law. It limits in-patient psychiatric care to 190 days for an individual's lifetime but does not set this limit on other hospital stays. Plus, it does not cover most long-term treatments for people with mental illnesses.

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Wisconsin lawmakers need to hear from real people about the impact the direct care workforce crisis is having on your life!

Aging and disability advocates are collecting stories about the direct care workforce crisis. We want to hear from everyone—people who need direct care workers, family caregivers and direct care workers—about why direct care workers are important and how the crisis is impacting people.

Please submit your story using the following form by August 1: https://goo.gl/forms/tER259RStNwNDBJJ3.  If you are willing to share a picture to go along with your story, you can email photos to wiworkforcestories@gmail.com.

2018 Wisconsin Self-Determination Conference

October 29-31

Kalahari Resort, Wisconsin Dells

The Wisconsin Self-Determination Conference works to empower people with disabilities in Wisconsin to have more control over their lives. More than 600 people each year participate in the conference to learn more about self-determination and SDS so they can live independently, be members of their communities, and use public funds efficiently. The conference participants include people with disabilities and their family members, direct care providers, and professionals from Wisconsin’s disability community.

Registration Now Open for the 2018 Self-Determination Conference!

To register or apply for a scholarship online, visit: HERE

To download a paper registration follow the link: HERE

To download a paper scholarship application visit: HERE

Registration deadline is October 12, 2018

Catch the Early Bird savings by August 30, 2018

Conference Scholarships will be available until September 7, 2018 or until funds run out. There are a limited number of scholarships available and they are determined on a first come, first serve basis. We will try to approve as many requests as possible, but we may run out before the deadline. If you are looking to apply for a scholarship, follow the link below to download the application.

If you have questions about scholarships or registration Please contact Michelle Roach at 920-723-5571 or email at selfdetermined@incontrolwisconsin.org.

Exhibitor Applications are now available for the 2018 Self-Determination Conference.

Calling all Wisconsin organizations that support self-determination and self-directed support in Wisconsin. We encourage you to submit an application. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in WI will be accepted. All applications will be reviewed by a committee and selected based on interest, needs, variety and mission of the conference. We are particularly interested in having exhibitors with innovative approaches to services and supports for self- direction including health and wellness supports for people with disabilities.  Exhibit tables are open Oct. 29-31, 2018.

Calling all Micro-business owners! If you are a person with a disability and own your own micro-business apply to share your gifts and talents with over 900 people this October? Be an exhibitor at the 2018 Self-Determination Conference!

Exhibitor Application

Application Deadline: July 10, 2018

Sponsorship Applications are now available for the 2018 Self-Determination Conference.

We are accepting sponsorship to the 2018 Self-Determination Conference. Conference sponsorships are used to increase the  number of scholarships we can provide to  people with disabilities and their families and help to keep  conference fees are low as possible.

Your contribution will help us continue to empower self-advocacy and self direction in Wisconsin.

For additional information please contact  Fil Clissa at fil.clissa@wisconsin.gov or call 608-266-5395.

Sponsorship Application

Who is going to get me up in the morning?  Do I have lunch covered?  Who has the dinner shift?  Is the bed shift covered tonight or will I have to sleep in my wheelchair?  Did everyone submit hours?  While these aren’t things people typically think about, questions such as these run through my head usually many times a day.  When you rely on others for help with almost all of your basic needs, you’re practically forced to constantly think about these things.

Recently, thanks to “Facebook Memories,” I was reminded that it has been two years since I started hiring my own caretakers through Self-Directed Personal Care (with IRIS).  What a learning experience it has been!  Before I switched to SDPC, I had been with many different home care agencies over the years.  As I explained in a previous entry, I started with home care in junior high or high school.  Back then, it was just for like an hour after school just to help me off the bus, get me inside the house, help me to the restroom, and feed me a snack.  It was when I moved to UW-Whitewater that I truly learned what home care was.  Although, I didn’t realize it at the time, the care agency that I had down there was by far the best agency I’ve had.  Sure, I had some issues with them, but they worked with me, and always made sure I was well cared for.  Granted, I realize a lot of it probably had to do with the people I became friends with, but the administration worked with clients to ensure  they were happy with services.  After college, while at my parents, I worked with two different care agencies which for various reasons didn’t work out.  When I moved to Oshkosh, I started with an agency that was connected to the apartments I moved into.  I was with them for over five years.  Unfortunately, due to a rule change, I had to switch agencies.  I was with another agency for eight months and I had a plethora of issues.  Tardiness, no shows, and the caliber of workers were just some of the problems I had.  It wasn’t safe for me to stay with the agency, so I switched to SDPC.

Hiring and scheduling my own staff is like a full-time job.   I post ads online on places such as Facebook and indeed.com.  Fortunately, my mom helps me with the initial process.  We may be changing how we do things in the near future, but, for now, when I get a name of a person, I forward the information to my mom.  She calls the person, tells them a little bit about me, and sort of does a phone interview.  If the person is interested, I then email the person the packet.  I tell them to print the paperwork off, fill it out, and to email me to setup a time to drop it off.

Unfortunately, it’s getting harder and harder to find people.  Most job websites now change to post jobs.  I’d maybe consider it if I thought It’d help get more applicants, but I honestly don’t think that’s the case.  One of my biggest problems is that I have short shifts.  My longest personal care shift is two hours.  Understandably, many people don’t want to work for an hour or two at a time.  On the other hand, though, what’s a person like myself supposed to do?  I don’t need, want, or quality for around the clock care.  I just need assistance during certain times of the day.  Of the hundreds of employee packets I send, I’d guess I hear back from less than 25% of the people. When I do get a person’s paperwork, it’s a gamble whether or not the person will still be interested in the job by the time the paperwork gets processed.

With the Fiscal Employer Agency (FEA) I have, the amount of paperwork people need to fill out is ridiculous, and it takes at least two to three weeks (longer most of the time) to get people approved.  By that time many have often found different jobs.  Yes, I’ve thought about switching to a different FEA, but there are different factors that go into that., First of all, the last time I checked, the FEA I have was the only one that had an electronic time sheet system.  For me, that’s a must.  I have to do everything electronically.  I haven’t looked into it recently, but I did hear that another FEA may have started an electronic system.  Secondly, there are only certain dates when they do transfers, and you have to get all of your workers to fill out and sign paperwork months prior to the date.  Frankly, that’s just not feasible in my situation.  I have staff turnover almost monthly and I can’t imagine having to work between two different FEAs during the transition trying to figure everything out.  In the future, I may reconsider because other FEAs are said to have faster turnaround times for new workers, but, for now, I plan to stay with the one I have.

I currently have about 13 workers (besides my parents), but only six or seven are really active.  I’ll just say you learn a lot about people when you’re the boss.  It’s amazing how much work ethic vary from person-to-person.  I’ve learned that with some people nothing gets done unless I’m right there watching.  I’ve also realized that some just don’t care about how they treat otters.  In addition to people giving me attitude when I ask them to do things, some people try to rush my cares so they can leave early.  I’ve had multiple people quit on very short notice.  Last year, a person who had been my main aide for several months, decided to quit showing up for shifts without any notice, and stopped responding to texts and calls!  On multiple occasions, people have called in on short notice, including in the middle of the night, or not shown up at all.  When that happens, I message everyone in my group right away to see if anyone can help me.  Unfortunately, not many people are willing to pick up shifts on short notice.  Depending on what shift it is, I often go without substantial food or using the restroom until the person for the next shift comes.  I’ve learned to always have some finger foods (like pretzels and fruit snacks) in baggies on my table where I can access them.  I’ve slept in my chair a few nights when nobody could help me to bed or get me up in the morning.  It’s unhealthy on multiple levels, but you do what you have to.  My parents always offer to come help, but, unless I’m stuck in bed in the morning, I usually say no because I don’t want to rely on them all the time.

Even with that many workers, I still constantly struggle to fill shifts.  Since early May, I’ve been at my parents every weekend but one because I can’t find people to fill shifts.  It’s incredibly frustrating because my parents just retired and want to travel, but, until I get more secure staff, they feel like they can’t go anywhere.  Often, they want me to just travel with them so they don’t have to worry about me being stranded without anyone, but that’s a catch 22 because then I’m not here for the staff I do have or to collect paperwork from new workers.  Plus, I sometimes have no desire to go where they want to go, and I feel like they should be able to travel without me.

The direct care shortage is nationwide, so I know I’m not alone in this battle.  Agencies, nursing homes, and hospitals are struggling to find caretakers too.  People say higher wages would help.  While I agree it’d help some, I don’t know that it’d be a “fix all” to this—especially in my situation.  I wish I knew what the answer was, but I don’t.  Until a solution is figured out, I guess we just have to continue to try our best working with what we have. 

***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.

Transportation is consistently identified as a top concern for older adults and people with disabilities. Survival Coalition wants to hear how your transportation options—or lack of options—impact your life.

Take our short survey here: https://www.surveymonkey.com/r/2018SurvivalCoalitionTransportationSurvey

The results of this survey will be used by Survival Coalition to inform policymakers on how Wisconsin can improve transportation for older adults and people with disabilities.  Please share this survey with your family, friends, and others interested in improving transportation for older adults and people with disabilities, and encourage them to take this survey by July 30^th, 2018.

According to a recent report, there has been a major increase in government spending on  home and community based services.  It has nearly doubted as funding for institutions has declined. The shift is believed to be largely due to changing expectations for people who have developmental disabilities.

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Family caregivers often experience significant financial burdens while also facing the challenges of managing the financial affairs of their loved ones. To help address these issues, ACL intends to award one cooperative agreement to undertake activities to improve the financial literacy and preparedness of family caregivers in two key areas: 1) for family caregivers to ensure their own financial well-being, and 2) to better equip them to undertake “financial caregiving” tasks on behalf of a care recipient. Objectives for this project include advancing the understanding of the need for and the available interventions to improve the financial literacy of family caregivers; develop and test new interventions to improve/strengthen financial literacy among family caregivers; and, broadly disseminate project findings, new interventions, and best practices that emerge from the project.

Funding opportunity number: HHS-2018-ACL-AOA-FLFC-0309

Estimated total program funding: $250,000

Proposals due: August 10, 2018

View the full funding announcement on grants.gov

Older adults overwhelmingly prefer to stay in their homes and communities as they age, but millions live in homes that lack accessibility features that support doing so safely and independently. Home modifications and repairs can help older adults age in place and maintain their independence. In many cases, home modifications can also help to prevent falls and other accidents. ACL intends to award one cooperative agreement designed to address barriers to optimal access to and use of home modifications that support aging in place. The project will be expected to provide technical assistance and serve as a repository for home modification best practices and innovations that can be replicated at the local level.

Funding opportunity number: HHS-2018-ACL-AOA-HMOD-0308

Estimated total program funding: $250,000

Proposals due: August 13, 2018

View the full funding announcement on grants.gov