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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

A recent survey found that the majority of family caregivers are stressed out by the demands of their family members with developmental disabilities and have deep concerns about the future.  Family caregivers spend an average of 57 hours per week supporting relatives with disabilities.  Caregivers report that these obligations are taking away time to address their personal needs, tend to other family needs, and keep a job.  

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The U.S. Department of Transportation is seeking public comment on amending its Air Carrier Access Act (ACAA) regulation on transportation of service animals. In the Advance Notice of Proposed Rulemaking on Traveling By Air with Service Animals the Department seeks comments on: 

1. treating psychiatric service animals similar to other service animals;
2. distinguishing between emotional support animals and other service animals;
3. requiring emotional support animals to travel in pet carriers for the duration of the flight; 
4. limiting the species of service animals and emotional support animals that airlines are required to transport;
5. limiting the number of service animals/emotional support animals required to be transported per passenger;
6. requiring service animal and emotional support animal users to confirm that their animal has been trained to behave in a public setting; 
7. requiring service animals and emotional support animals have a harness, leash, or other tether with narrow exceptions;
8. limiting the size of emotional support animals or other service animals that travel in the cabin and the potential impact of such a limitation;
9. prohibiting airlines from requiring a veterinary health form or immunization record from service animal users without an individualized assessment that the animal would pose a direct threat to the health or safety of others or would cause a significant disruption in the aircraft cabin; and
10. no longer holding U.S. airlines responsible if a passenger traveling under the U.S. carrier’s code is only allowed to travel with a service dog on a flight operated by its foreign code share partner.

Comments can be submitted via Regulations.gov thru July 9, 2018.

 Self-Determination Network News:

June 2018

Connect | Share | Learn | http://sdnetworkwi.org/  

Call for Exhibitors for the 2018 Self-Determination Conferencee

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.

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.

Hurry! Applications must be received no later than July 10, 2018. Space is limited, and spots are expected to run out before the deadline date.

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.

For June, we shine the spotlight on Jane. This past Diehard Advocate award recipient is dedicated to helping people with disabilities find employment. She also encourages people to ask for help because we can all learn from one another.   Stop by this month's Member Spotlight to get to know Jane.

 Stacy’s Journal

“Never judge someone by the way he/she looks.“ Most people are taught that beginning at an early age. Having a disability often makes fitting in difficult. Some people are completely okay with not fitting in because of their limitations, and others work hard to hide theirs. In this month's entry, Stacy discusses how she handles the desire to fit in.  We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Be Inspired:  It's graduation season.  Many people with disabilities will cross the stage overcoming tremendous odds  Read about how one UW-Green Bay grad didn't let his disabilities or growing up in poverty stop him from achieving his dream.
• Advocacy Trainings:  Parents in Partnership (PIP) and Youth in Partnership with Parents for Employment have released their 2018-2019 training schedule.  Learn about these programs and get involved!
• Voting Rights:  It's not widely known, but in many states people with disabilities can be stripped of their right to vote. Find out why many people feel that the law needs to be changed. 
• Wisconsin Disability Vote Coalition:  During this important election year, the Wisconsin Disability Vote Coalition (WDVC) will work to increase voting turnout and participation in the electoral process among members of Wisconsin’s disability community by hosting voting trainings and registration days, creating comprehensive resources for people with disabilities around voting rights, and working with municipalities to ensure their polling places are up to accessibility standards.  Learn how you can participate.
• Technology Initiative:  Microsoft recently announced a multimillion dollar initiative to develop technology that will benefit people with disabilities. Read about what the initiative will  create.
• Caregiver Check-In Mandate Delayed:  Lawmakers have delayed legislation a controversial Medicaid requirement that personal care providers electronically check in when caring for people with disabilities.  Find out why this requirement is causing controversy.
• The Disability Integration Act: The Supreme Court ruled that people with disabilities have the right to live in the community rather than in institutions and states must provide them with the services they need to do so. However, this rule is often ignored.  Learn what this Act would do to ensure that people are allowed to live in the community.
• Feedback on State AT Plan:  Wisconsin's Assistive Technology (AT) Advisory Council has completed a draft of Wisconsin’s State Plan for AT 2018-2020. The Wisconsin AT Advisory Council welcomes your comments, suggestions, and feedback on the state plan.  Public comment ends June 30.

 Upcoming Events                                    

Here's a sample of upcoming events listed on the Self-Determination Network:

• 2018 Aging Empowerment Conference: June 14th-15th, Crowne Plaza Hotel and Conference Center, Madison WI
• Disability Rights Wisconsin Informational And Listening Session:  June 22nd, 4p.m. to 6:30p.m., Urban League of Greater Madison, Madision WI
• Endless Possibilities Conference:  August 3rd, 8:30a.m. to 3:30p.m., UW-Whitewater, Whitewater 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.

Even though many locations claim to be accessible, people learn that they are not when they arrive. Some of these people have tried to fix this problem by creating accessibility guide apps. App makers use maps from providers like Google and data from users to create better accessibility guides. Access Earth, AccessNow, and AXS Map are some of those apps.  Most of the guide apps are incomplete, but some are better in locations where users have added a lot of content. Getting people together to test an area for accessibility and sharing the results with an accessibility app is a way to improve apps and teach people about accessibility.

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