disAbility Connections ‘dC’ would like to express our deep gratitude and appreciation of Dave Fleming, following his passing away on June 21^st, 2020.  Dave was an integral part of the Jackson community and longtime advocate for people with disabilities.  His dedicated support to the local community was evident in his willingness to volunteer, join, and participate with numerous organizations as a way to give back and ingrain himself with his fellow residents.  (Figure 1: Dave Fleming stands at the far-right end in a black leather jacket, holding a shovel during the Community Bandshell ground breaking at The Cascades.)  To some people Dave was fellow Rotarian, a dC Board Member, an architect, a colleague, and as dC employee Carmon Yeloushan said “He was giving, caring, a supporter, fun, gentle, and a person that lit up the room with his mere presence and smile.”

          Dave continually provided disAbility Connections with assistance as a member of the disAbility Connections Board and Facilities Committee.  Dave’s background as an architect helped in designing the initial renovations and additions to the buildings we use as our office in Jackson along with Fix-dis across the street, and was always one to provide support to make environments as inclusive as possible. 

Kindness and helping were in his nature, going the extra distance by helping plan and setup the annual Disability Awareness Dinner to ensure even the stage was accessible, despite the fact he was a guest and had already done more than enough as he often already donated items to be bid upon during the dinner.   

          Commitment to the community and dC carried over into his time as a Rotarian and their Rotary Ruler Days fundraiser.  He would not only take the time to assist in collecting donations standing in storefronts around Jackson, afterwards he spent additional time to tally the totals gained over the days fundraising for disAbility Connections.  Additionally, Dave assisted in other fundraising ventures.  He was involved with setting dC up as a host for blood drives in our parking lot and also driving golf carts during race weekends at MIS, providing rides to people with disabilities throughout the weekends.

          Dave had an uncanny ability to put those around him at ease and also feel special.  An important aspect he also helped ensure was having pictures taken during events.  Not only to document events as they happened, but also to share with people so they can share in the memories too.  He thought it was so important that he even provided dC with a camera so we could continue the tradition.  During Rotary Children’s Christmas Parties he would make it a point that each child had their own picture taken with Santa to be able to take home after the party.  

        Longtime dC staff member Holly Peterson said it best when thinking about Dave and his time with dC, “Dave was a fun guy with a ton of patience and reason. We were blessed by his presence in being a big part of taking dC to where it is today.”  She also reflected on his genuine care for dC and the employees as it was not uncommon to see him at staff lunches, meetings, or stopping door to door in the offices as he asked how staff were doing and if anything new was going on in the various programs.  (Figure 2: L-R Jim Grose and Dave Fleming)

          As we reflect back on Dave Fleming, there is sadness for his loved ones and those around him during the difficult days, but also comfort in knowing that people are better off now and for years to come because of him.  Dave may no longer physically be with us, but through our memories and lessons learned he has left us knowing how to live a life caring for others, advocating for people with disabilities, and developing long lasting friendships with memories that can never be taken away. 

Sharing Adaptive Equipment Experiences and Ideas

By: Brian Elliott

          There are many things that can be frustrating to deal with on a daily basis.  At the top of the list for myself as a Quadriplegic, is the lack of function within my hands.  So much of my time, energy, and frustration could be spared if only I could use my hands the “normal” way.  Especially when it comes to both reaching/picking up items and also holding objects in my hands and moving them against resistance.  As much as I tried to remain active and independent using exercise equipment or doing household tasks, I encountered the recurring challenge of things being out of my range and then the ability to keep the item(s) in my hands and being functional.  I needed a tool that would allow me to independently reach and pickup items out of range from my wheelchair and also a tool or technique that would hold objects in my hand securely and not slip out.  Luckily, that’s where some simple equipment came into play.  Through a series of trials and errors with an Occupational Therapist (OT), I was introduced to a grabber/reacher for people without typical hand strength and recently bought some gloves/wraps for my hands to securely hold objects while I work out or try other activities. 

          Most reacher’s are designed for people with “normal” hands.  You simply squeeze and the reacher squeezes the ends together, grabbing the object at the end between prongs.  However, without hands to function that way, how could I use a grabber/reacher?  I tried using the standard reacher but combos of small handles, no finger movement, and awkward positioning lead to more fails and drops of the reacher.  Then I needed a different reacher to get the original reacher I dropped on the floor. The reacher the OT proposed for me used wrist extension (bending at the wrist and bringing the top of your hand back up towards the elbow) to close and grasp objects.  Thanks to this design, I’m able to do numerous tasks that otherwise wouldn’t have been possible for me to easily do independently.  Such as reaching into a laundry washer or dryer to grab clothes, reach up into a closet, or picking items off of the floor when I drop them.  Which is often, I drop something nearly every day and the grabber comes in handy! 

          Next, I needed something that would securely hold items in my hand against resistance.  When I would workout at a physical therapy clinic I would need a worker to wrap my hand around handles or weights with elastic wraps so I could do the exercise.  Which technically worked most of the time.  Sometimes the wraps wouldn’t hold, or I could have a finger inadvertently curled over which could be problematic.  But, I couldn’t take the worker(s) with me everywhere for those scenarios and once I was done, I was literally stuck to the machine/equipment until someone could come and unwrap me.  I wanted something I could get on and off by myself.  

          I found these “gloves” that use two thick Velcro straps with rings at the end to wrap around your wrist and then pull over your hand to create a fist with the handle or object in your palm securely.  Using these, I can slip a finger in the ring and pull the strap tight around my wrist and hand.  I have been able to work out without fear of dropping weights onto the floor (or myself), as well as trying them out with golf clubs and using a hammer.  These “gloves” have been a great way to remain independent and active. 

         

The last little aide I have found to be useful in many different spots have been simple carabiners.  The larger open space is better for me than small circles in terms of ease and daily use.  Mainly used on zippers for my backpacks or on my keys as a simple and cheap D-ring that I can lace a finger into and pull.  Works great for hanging my keys on a brake lever, quickly being able to get a finger into position to pull a zipper, or easily grabbing with my reacher.  I found the smaller key rings to be too small for me to use quickly and easily, and more difficult to try to use for picking up the items I drop.  Nice to find a cheap fix when all the other gear that is “specialized” for people with disabilities tends to come with a higher price tag.

          What about you?  Have you tried any of the examples I provided?  What were your experiences?  Do you have any equipment you can share that has made a difference in your daily life?  Any equipment that you have tried and want to try again or ideas that people should design to make life easier?  The best advice on gear and life hacks come from others with disabilities.  Help share the knowledge or any hacks you have developed over the years that others can try in their lives.  If you have photos or tips on gear and want to share with others; leave a comment and email them to Brian@disabilityconnect.org.   

Covid-19 Brings to Light the Importance

and Shortages of Caregivers

By: Brian Elliott

This pandemic reveals an essentially needed service for some people with disabilities.  Whether you refer to them as a Personal Assistant, Aide, Caregiver, or something else, their role cannot be denied importance.  But, what happens if you need to find a replacement on short notice?

The Covid-19 pandemic has created a world where agencies that can typically staff these positions, are no longer able to meet the demand.  Businesses are closed, potential workers are afraid to go out or calling in sick.  Leaving many people trying to figure out how they are going to get the help they need.

While the needs of the position will vary by the person, finding an assistant may seem daunting during a time like now, but it is not unachievable and here are a few options that can help to find an assistant.

Details Matter

Explaining what your needs are is truly an important part.  It helps to draw people in and allows for them to get a grasp of what you will be asking of them.  People often do not know what it takes to be an assistant for a person with a disability, and the tasks will vary by the person’s needs.  Another important detail is the time of day that the assistant will be needed and the hours that the position will require.  Is it only an hour or two in the morning or night, or full day shifts that will be needed?  How much will the person be paid for their services with you?  One additional tip, remember that cash is king and money makes the world go round.  If you are in a financial position to help boost the pay for your personal assistants, it may help draw applicants and retain their employment, avoiding a revolving door of assistants. 

Ask Friends & Family

Friends and family are one of the best resources to ask if they would be willing to help or know of anybody that may be interested.  People are more likely to work for someone they know rather than a stranger. An important detail when searching for a new assistant is explaining what your needs are. If nothing else, letting them know your needs can help in case they cross paths with someone.

Social Media has a Broad Reach

Consider using social media sites like Facebook in multiple ways.  You can use it to ask friends and family from your personal page or set up a page to post a job ad.  You will have to start your own page as a business or organization, but it will allow you post under jobs https://facebook.com/jobs.  Not only are there millions of users, but during a time like now, there are many people looking for any aspect of work.  Whether you are able to provide full-time hours or you are in need of just a few hours, you may be a perfect fit for someone in your area.  An added benefit would be seeing if you know people in common and possibly using them as a reference.  The person will be in your home after all, any background or references you can get may be helpful.  Also check if your town has any social media and any local groups you could join.  They may know some people or references that will help.

Reach out to the Local CIL

Centers for Independent Living (CIL) are all across the country, divided up by counties in every state.  CIL’s are incredible resources of information for anybody with a disability.  Locate your nearest CIL and contact them for information, as they may know even more resources that you haven’t checked into.  If they are not able to provide anything new, they may be able to assist with the process and help facilitate getting your needs met.

Summary

Throughout the searching process, remember that an assistant’s critical role of helping people with disabilities in their daily lives may not be known by the general population and in times of need may make it difficult getting proper help.  The details you provide will be very helpful in your job posting, friends and family are a great first resource, using social media can broaden your reach, and don’t forget to check in with your local CIL.  Don’t let your search discourage you and taking these steps will at least share the needs you have, convey the importance of proper systems to daily living, and help spread the word by letting other people and technology reach people you may not encounter otherwise.   

          The role of our Nursing Facility Transition (NFT) Navigator helps to guide Medicaid recipients through the steps and processes to leave nursing facilities.  Isn’t it such a relief to get back and sleep in your own bed and be in your own environment after an extended time away?  It is one thing to have been vacationing or on a work trip, a little different story when it is forced because of health related issues.  These aren’t uncommon scenario’s either, our NFT assists about 40 people each year.  Sometimes depending on the needs of the person to be able to return home, some modifications or equipment are needed to ensure a safe environment before being allowed to be discharged.  Especially when it involves challenges that many haven’t faced before or experienced at this stage in their life. 

          A recent nursing facility transition, Kimm, has had a tough couple of recent years with a combination of ailments combining and forcing her into multiple extended hospitalizations and rehab stays.  Through those stopovers at Allegra, she first met disAbility Connections NFT Carmon.  After her most recent hospitalization following a knee replacement, Kimm knew she wanted to get out of there and back home with her boyfriend and their cat.  The most recent knee replacement comes just a few months after having the other knee replaced.  So she has not been able to physically do as much as she would like.  The combination of past health ailments and recent surgery were preventing her ability to be self-reliant and transitioning back home from the nursing facility.  Through some planning and working with Carmon, Kimm was able to go back home with some new equipment and systems in place.

          “Carmon went the extra mile to stay in contact and care for me”, said Kimm as she shared her experience, “she was able to get a ramp installed, helped arrange for chore services to come, and even got me one of those recliners to help me get up”.  Being home has been great for her morale and her health is getting better.  Setting a chair in the turn-back of the ramp works as a “mini-porch”, getting Kimm outside and able to get fresh air and socialize with neighbors as well from a safe distance as they pass along the sidewalk.  She has been doing physical therapy from home, and trying to lose some weight while hoping to reach some of her goals of gaining more strength and stamina to not needing a walker anymore.  With some grit and perseverance Kimm hopes to be out helping in the yard this summer while being able to enjoy the company of people as they can visit her at home rather than inside of a hospital or nursing facility.

          An Employment Navigator from disAbility Connections (dC) can help people with disabilities identify employable traits to develop and align them for future employment opportunities.  The impact of COVID-19 is being felt throughout every city, state, and nation. There is plenty of stress and strain to go around.  Many people are finding themselves at home with more time on their hands than they know what to do with.  Staring at one’s own walls and looking forward to an uncertain future can easily create a feeling of helplessness.  For people with disabilities, try to think of this as an opportunity to gain even more employable skills.  While thinking outside of the box and being problem solvers are often skills held by people with disabilities, we can also gain more attributes employers are seeking. 

            Shelby, a participant in dC’s Employment Navigator program, has really taken to the advice and relationship built between her and Nick our Employment Navigator.  Since the Stay-at-Home order was first announced there haven’t been a lot of new prospects towards finding gainful employment.  Nevertheless, Shelby has been fully dedicated to developing herself both personally and professionally in preparation to be the best applicant possible when the time comes.  Equipping herself with a diverse background through interesting job explorations, educational accreditations, and local volunteering experiences.  Strong characteristics on any resume!  A couple of skills that an Employment Navigator can help with are with resumes and interview prep.  Working together, the duo refined her resume and ability to interview and field questions.  Although jobs are hard to come by at the moment, Shelby is doing everything she can to burst out of the gate when everyone gets back to normal, even dedicating an hour each day to learning Spanish so that she can be a more versatile applicant!

            disAbility Connections values peer-support and creating relationships which are based on trust and understanding. Shelby has continued doing weekly phone calls with the Employment Navigator and intends to continue working together beyond the lockdown.  This is what she had to say when asked about her experience in the Employment Navigator program,

"Working with a navigator who's also from a small town really helped me be at ease and connect with [him] easily. I've learned so much more about how my resume can look more professional and how the way I answer interview questions alters the interviewer’s opinion of me.  Nick is a good guy and I know he's a good person to have working for disAbility Connections."

            We cannot currently lay claim to a future in which 100% of people with disabilities--who intend to pursue employment--find themselves in meaningful, financially-viable workplaces.  If you think an Employment Navigator could be helpful in your pursuit of a job, please reach out to us and we will see what can be accomplished.  In the meantime, for many people the work has begun now; as we all take steps to develop traits and skills in the one thing that can be controlled during tumultuous times: oneself.  

            Most of us take what seems like a small thing, coming and going from our home, for granted.  No second thoughts, as we don’t realize the impact of not having those choices.  A ramp provides those exact options for someone with a disability.  It’s not only physical freedom, it’s mental freedom.  Opportunity to access all of the goods, services, and people in our community.  It’s the choice to come and go at your own will.  It’s peace of mind that you don’t always have to ask for assistance.  It is INDEPENDENCE!

            disAbility Connections, in collaboration with The Jackson Rotary Club have built over 250 ramps for Jackson county residents over the past 20 years.  Our association with the Rotary club is close and longstanding.  As a matter of fact, disAbility Connections roots were established in 1924, back when rotary club members began taking children with disabilities to doctor appointments.  Almost 100 years later, the Jackson Rotary Club and disAbility Connections are still working together.  Combining to provide the needed funding, planning, and volunteers to build 6 to 10 residential ramps per year in the Jackson community. 

            This is a real ‘feel good’ program for our staff and volunteers.  Some programs are difficult to get excited about because the assistance provided is intangible and long term so we don’t see immediate results.  Not so with the ramp program!  We LOVE to see the look on a community member’s face when they can finally leave or have access to their home.

            A couple quick examples would be how we recently built a ramp for a resident that hadn’t been in her own home for 4 years.  She was in and out of the hospital and living with her mother because her home didn’t have wheelchair access, while a friend lived in her home.  Following the completion of her ramp and her ability to return home, the look of pure joy and her tears were ample reward for a job well done.  

            Then there is Doris, pictured here, that went 2 years with her only access in and out of her home required assistance from several people.  People had to physically carry her up and down steep stairs.  Not only was it inconvenient and impractical, it was not safe for her or the helpers!  Needless to say, she couldn’t wait to get and try out her new ramp.  Her first words were “I’m free!!!! I can get out!!”

            Do you know someone that a ramp has helped improve their life?  We’d love to hear how people are doing and some of the impact that a simple ramp can make in a person’s life.  Leave a comment below or share the story with your social media.

LOAN CLOSET

At some point in our lives most of us will experience, at minimum, a temporary disability.  Whether that is through surgery, illness, accident or just that darn aging process.  The loan closet at disAbility Connections uses affordable pricing to assist people with medical equipment (crutches, scooters, shower benches, canes, and much more) that may be needed as either a temporary rental or long term.

We provide approximately 760 people each year with needed equipment.  Much of the equipment we provide is either not covered by insurance or requires a high deductible.  No matter what your income we strive to be sure that no one goes without. 

We are extremely lucky that Jackson is such a generous community.  Equipment and monetary donations allow us to keep this program successful.  We sanitize and repair donations in preparation for loan.  What we can’t repair we remove any usable parts and use for our Fix-dis repair program.

When you visit our office the first face you are likely to see is Brooke.  Her smile and energy are contagious.  I’ll let her tell you in her own words her feelings on working with Loan Closet customers.

Brooke, Customer Relations Specialist

  We will have a consumer come in looking for something out of the ordinary and it’s difficult to tell them that we don’t have what they need.  Then “poof” someone will make a donation for exactly what they were looking for. The loan closet is like a genie.  One of the most rewarding things I get to do in my job is calling the consumer to inform them that we are able to meet their need.

In my short time working with disAbility connections and the loan closet, I continually hear from our community how grateful they are and that we made such a huge impact during a tough time in their lives. When you see someone meeting their goals through the loan closet you can see their independence rise, which is our mission; to see those with disabilities live their lives as independently as possible.  It’s a beautiful thing!

We aim to help people remain as independent as possible and access to affordable durable medical equipment is an important piece in the formula.  If you have used the loan closet or someone you know has, leave us a comment or share the experience on your social media.  

Disability Defining and a Necessary Change in Rhetoric

As a person with a disability, I can’t keep track of how many times I have been referred to as a “disabled person.” First of all, thank you, truly, for putting my disability before who I am as a person, as that does leaps and bounds for my self-esteem. Secondly, I feel for those individuals who you have referred to as such in the past. Let me, potentially, be the first to tell you that, for all intents and purposes, that’s not the correct identification. Before you lose your mind due to the fact that I have disrupted a deeply-ingrained thought process, allow me to explain the difference.

Something called people-first language is put in place when people with disabilities are referred to as such, putting the person at the forefront and not the disability. Instead of autistic person, per se, you would say person with autism. Instead of wheelchair-bound, you would say person who uses a wheelchair. A few extra words can make all the difference.

With this in mind, articles have been written for and against this necessary change in rhetoric. While disability-first language, as I will call it, is poor form, others dispute that people-first language is just as distasteful. The focal point behind this thought process stems from the idea that an individual’s disability is looked at in a negative light when people-first or person-first language is used. “Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see,” wrote Cara Liebowitz in a 2015 piece on the subject. Essentially, Liebowitz thinks that her disability should be mentioned when she is being referred to, as it is a part of who she is. She writes, “The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.”

Admittedly my stance on the topic changes depending on the situation I am presented with and a concrete response on Liebowitz’s ideas is something that I have yet to establish, even after reading her piece three times through. I much prefer “person with a disability” over “disabled person.” I am not a girl with cerebral palsy, but much more that should be considered first before my disability is even approached in conversation. While “person with a disability” is more respectful than “disabled person”, that poses the question of whether a disability should be mentioned at all.

Would you prefer to have your disability mentioned in conversation when you are first being introduced to someone, not at all, or at another point? Do you identify as a “person with a disability”, a “disabled person”, or neither?

      Transportation is vital for community stability and growth, but most people don’t usually think about public transportation especially if they own a vehicle and can drive it.  The hard fact is that some of us and the elderly can’t drive and/or can’t afford a vehicle and want to live independently, so we rely on public transportation or para-transportation to go places.  Here in Jackson we are very fortunate to have the Jackson Area Transportation Authority (JATA) which provides both public and para-transportation. 

     The difference between them is with public transportation. JATA’s vehicles are on a set schedule and can only be accessed at a designated bus stop or the downtown transfer center. Another thing people need to be aware of is that public transportation buses are restricted to stops within the city with few exceptions. That’s why most people call them city buses. The Para-Transit system is for a person with limitations (ADA eligible) and can’t make it to a bus stop. The person would need to have a medical professional certify that they have a disability using a form available through JATA. Once approved the person may call JATA’s dispatch center and arrange transportation through the dispatch center at 517-788-8410.  You must call at least 24 hours in advance but, if you live in the city of Jackson you can schedule a ride 2 weeks in advance. If you live outside of the city 24 hours in advance is the maximum time allowed.  JATA’s main number is 517-787-8363. At your request, they will send you a bus schedule which shows where the city buses are scheduled to arrive and when. You can also get a brochure telling about the programs JATA has available.  Para-Transportation, on the other hand, works on a demand response, which means that, once approved, you can schedule a ride door to door from your home to the location you need to reach.   All JATA vehicles are equipped for wheelchair users including the public transportation buses.                   

  Para-Transit vehicles are not restricted to the city but can go anywhere within Jackson County as long as you live in the city.  If you happen to live more than ¾ miles outside the city Para-Transit still will pick you up but they only do pickups 3 days a week whereas city residents can get a pickup 7 days a week, depending on what day and time you need.  For information on fares, schedules or general information call the main number for JATA, for compliments or complaints call 517-780-3775.

Here are some of the main things you should know about the transportation service available here in Jackson.

• 1.     Main number for JATA is 517-787-8363.  When calling this number you can request:

  A.    General information about services they offer
B.     Schedules and Brochures, etc.

• 2.      Para-Transit’s number or Reserve-A-Ride as they call it is 517-788-8410.  When calling this number you can schedule a ride, they will tell you what the fare will be as well.
• 3.     The number for compliments or complaints is 517-780-3775.  When calling this number you can tell them how great there service was to you or what went wrong.

Now it’s time to reveal myself.  My name is James Cyphers and a person with a disability. I deal with the effects of Post-Polio and am a wheelchair user.  I work part-time at disAbility Connections as an Independent Living Specialist.  I’ve worked as an advocate for people with disabilities for approximately 18 years and I have been a board member for JATA for about 12 years, that’s how I know this stuff about JATA plus I’ve been riding JATA’s buses for almost 40 years.  I’ll end here, but I have much more to say so stay tuned!  And I’d like to hear from you as well.

 

We’ve likely all seen some great uses of Duct Tape in our days.  I’m all for it, I know the cosmetics aren’t the best, but if it’s doing the intended purpose and it’s only temporary who really cares??  Even if it isn’t short term, if you are good with it, that’s all that matters.  But what about the times duct tape isn’t going to do the job?   In my opinion, Zip-Ties are the next best thing.  Plus a package/bag of a few zip ties are relatively cheap and not very hard to stash somewhere in a pocket, purse, backpack, or wheelchair so you can always have some on you.  Duct Tape isn’t as easily stowed out of the way.  But why would zip-ties be so useful you ask?  What can they do for you that duct tape won’t?  Allow me to provide some examples.

For any mobility device users, we are often just one bad bolt from losing either a key component or our overall mobility.  However, if you have a stash of zip-ties with you it only takes a few to pass through where a bolt broke or fell out and you can continue on your way.  One time I was just getting into my van, heard a loud snap, and suddenly my back rest came unattached.  Without putting those zip ties into the missing bolt hole, I wouldn’t have been able to use my chair.  Lacking any core strength in my body, I would have been on the ground in no time if I had tried to move along and not address the broken bolt.  Then I’d be on the cold ground versus sitting in my chair still.  Big difference.  I have now had to use zip-ties at least 3 times to temporarily hold my chair together in place of a broken bolt until I can get home or a hardware store.

Although this winter has been bearable so far, we are just one snowstorm away from wreaking havoc on mobility device users in our areas.  All people don’t or can’t get out to shovel driveways or sidewalks in a timely manner.  One of the joys of using mobility devices in Michigan is dealing with all the weather elements and then unintentionally carrying those elements with you wherever you go.  Manual wheelchairs get hard to propel because the push rims get slick from the wetness in snow and casters get filled with it as well.  Power chairs perform better in snow, but still have drawbacks.  The false sense of power may lead users into deeper snow with opportunities to get stuck.  But, if you have those handy zip-ties you can pull a couple out and loop through spokes and around your wheels/tires.  Giving you some new, self-designed snow chains on the power chair that should help get traction and you going forward. 

Maybe you don’t use a wheelchair of any kind, but have difficulty using your hands on something like zippers.  Simply slide a zip-tie through the end of the zipper and create yourself a loop.  Should make it easier to get a finger or something into the loop to push/pull.  I have used these little loops on things like my backpacks or clothing.  Just another example of the ways you can use simple cheap items like zip-ties and provide a pretty good temporary or long term fix. 

Hopefully that’ll get you prepared for dealing with the little nuances we experience in daily life.  Whether you try one of the tips I suggested above or have some secret uses for other products, we can help each other by sharing knowledge.  Becoming more aware of what we are getting into and potential life hacks that keep us rolling.  #Awareness