Smart Shopping: Home Modifications

By Aimee Sterk, LMSW, MATP Staff

home shaped icon with a circle around ittwo men measuring a piece of metal for a home modification

When looking for someone to hire to do home modifications there are several key things to consider as you make the best choice for yourself. Home modifications are sometimes tricky. Some builders who have never done them before think they are no different than any other remodel job. This is just not the case. Just like you would not want your dentist to learn how to fill a cavity on you, it is easier, less stressful, and smoother to work with a builder that has experience in the home modifications. Everyone has to learn sometime, but they don’t have to learn on you.

We at Michigan Disability Rights Coalition/Michigan Assistive Technology Program and our partners around the state have seen dozens of ramps that were dangerously installed—very improperly—by well-meaning builders, neighbors and friends. It is a complicated process to correctly install chair lifts, ceiling lifts and other significant structural adjustments. Even grab bars are easily installed the wrong way—giving way when you need them. Then there are scammers on top of the well-meaning but ill-informed people.

Non-wheelchair_Ramp_IMG_0908
A poorly made concrete ramp built right through the middle of the steps with no rails makes a hazard for the ramp users and the step users.

The remodeling world is full of sharks who are especially like to prey on older adults and people with disabilities they think they can swindle.  News coverage of people who gave a down payment for remodeling or roof work only to have the “builder” never return are far too common and there is an entire television show just about people who have been scammed by builders and left with shoddy work or worse, dangerous situations.

This is not meant to scare you—only to help you prepare to be your own best self-advocate as you look to remodel your home to work better for you.

The Federal Trade Commission and HGTV have excellent articles on hiring a remodeler and the importance of having a contract in writing, and what that contract should include. Take a look at their recommended steps and add them to the Smart Shopper tips on our website.  Together these two articles provide an excellent starting point. Keep in mind a couple of other key factors:

  1. Contact your local Center for Independent Living and Area Agency on Aging. Both of these organizations are connected to reputable builders in their area. Often, the Area Agency on Aging or Home and Community-Based Waiver Agency contracts with local builders themselves to help people stay in their own homes. Centers for Independent Living help people move back to the community after nursing home stays. These organizations will have an idea of who is good and who doesn’t do good work in your area.
  2. Get multiple bids in writing.
  3.  Find out standard down payments in your area—definitely don’t pay the entire bill up front.  In California, the most you should pay for a down payment is 10%–to help protect from scam artists.
  4. Actually talk to references the re-modeler provides for work similar to what you are considering.
  5. Work with licensed builders—ask to see a copy of their license. The City of Niles has compiled a great list of Warning Signs a Contractor is unlicensed.
  6. Make sure the contractor is insured.
  7. Consider working with builders who have certification as Aging in Place Specialists.
  8. Only work with builders who are willing to explain things to you in a way you understand and treat you with respect. If they aren’t respectful when they are interviewing to do work for you, it isn’t going to get any better when you hire them.
  9. If a contractor bids on your project and their price is way below the other bids—be very wary—this is likely a scam. You get what you pay for.
  10. Try to get referrals from other people with disabilities in your area—word of mouth is a great way to learn about good, reliable builders in your community who know how to do home modifications. Your best bet is to work with someone who is local and has a good reputation with people you talk to.
  11. Good contractors are often very busy. If someone can do the work right away—this may also be a sign that they are not so good. Consider the additional recommendations on How to Shop for a Contractor.
  12. Make sure the contractor gets a building permit in their name—so they are liable for the work being done, not you.
  13. Trust your gut—if you are feeling uneasy, there is a reason, look for someone else.
  14. While you’re at it, you may want to consider the Michigan Assistive Technology Loan Fund for financing your home modifications.

Do you have tips or experiences to share?

 

Flying Friendlier Skies with Mobility AT

shadows of people inside an airline terminal with suitcases and departure signs

By Aimee Sterk, LMSW, MATP Program Staff

I was recently reminded of the RESNA (Rehab Engineering Society of North America) annual conference I attended in Indianapolis a couple years ago. There I met representatives from Scootaround who told me about a program I hadn’t heard of—Total Mobility Management for Airlines—they help people whose wheelchairs and powerchairs are damaged by airlines. Scootaround gets the devices repaired or replaced and supplies loaner chairs to use in the meantime.

Scootaround staff informed me that they have a nationwide network and work with all of the airlines to provide full service repair of scooters, wheelchairs and powerchairs. I had never heard about this service. While I don’t use a mobility device myself, I have many friends that do and have heard horror stories about airline experiences. In fact, several of my friends travel exclusively by car/train because of damage done to their powerchairs by airlines.

These stories made were in the back of my mind as I excitedly asked about how the program works. It looks like they get paid by the airlines to process these claims and provide this service. They have claims staff available 24 hours a day, every day. They work with local vendors with good track records at the arrival and/or departure location to service the devices. They also offer training and support to airline personnel on handling assistive devices.

Have you tried Scootaround’s airline service? What was your experience?

It looks like they also provide scooter rentals all around North America and help companies/events planners too by providing devices for conferences. Have you tried them for these services? What was your experience?

We are always looking to expand our knowledge of resources available.  Please share your knowledge and stories. Happy Traveling!

Disability Pride

 

A woman holding a sign that says my pride is being myself Carol
A woman at a disability pride seminar created her own disability pride poster– My Pride is Being Myself, Carol

By Aimee Sterk, LMSW, MATP Staff

Society urges people with hidden disabilities, like me, to deny we have a disability.  From the time we are born, we are bombarded with messages that disability is a negative thing – something to be avoided and feared. Our society teaches us people with disabilities are less capable, less valuable, less important, and less desirable than people without disabilities.

Some people treat us with disdain, some avert their eyes, some look with pity or tell us they are “ praying” for us—looking at the lives of people with disabilities as inspiration—imagining themselves with a disability and imagining that it would be horrible. All of these undermine our personhood as people with disabilities. We are either saints worthy of admiration for just living our day-to-day life, or pitiful and worthy of shame.

As people with disabilities we hear, live, and breathe these low expectations and then incorporate these messages inside our very being, where negative emotions are turned inward, creating low self-esteem and poor self-confidence. These views have long lasting, detrimental effects on our mental health. When people do not acknowledge their disability, cannot accept and embrace it, aren’t aware of the disability community, and do not advocate for their needs, the result is a small life full of self loathing.

When we deny we have a disability or believe that our disability is something negative, this can keep us from advocating for ourselves, accessing assistive technology (AT), and asking for accommodations that we need for full participation. I’ve felt guilty about my needs and kept quiet to my own detriment, putting off using AT that helps me.

Many programs exist to meet our needs, but they often do so from a charity model, with a “ pity” focus, making the person with a disability into a recipient of services instead of an active, vibrant part of the community who has a legitimate need for supports, assistive technology, and accommodation.

Organizations that operate out of a charity model or service model see people with disabilities’ lives as tragedies. In these organizations, the staff and administration are people without disabilities making decisions on how to best serve the needs of people with disabilities.

black border around words Disabled and Proud! The 'i' is represented by an arm with its hand in a fist.

Disability pride is the belief that disability is a natural and beautiful part of human diversity. Disability pride stands in direct opposition to ableism. Just as someone can be proud of being a man, woman, culturally diverse, or any other unique identity, one can also embrace their disability as part of their identity. With disabilities, there are barriers and oppression. There are also barriers and obstacles and oppression that result from being a woman, black, or lesbian. That doesn’t mean people with disabilities would rather become people without disabilities. I was recently with a group of colleagues meeting with someone without a disability and he said “of course no one  wants to have a disability.” I didn’t even know how to respond at the time, but looking back, to me that is akin to saying “of course, no one wants to be a woman.” While I have experienced discrimination based on disability and based on gender, I do not wish away being a woman or being disabled. They are both part of who I am. I am a proud disabled woman.

text Cure Ableism

There are many benefits to disability pride including: 1) higher self-esteem and self-confidence; 2) a sense of belonging and community with other people with disabilities; and 3) increased belief in interdependence and advocacy for accommodations. Individuals who find disability pride are more likely to be included in the community and successful in their lives, housing situations, places of employment, educational settings, personal relationships, and their community.

I’m ready and working to live in a different way. I have seen the gifts of my disabilities including being part of a greater community of people with disabilities, developing practices that have deepened my faith and connectedness, having a deeper understanding of myself and compassion for others, building my creative problem-solving skills, and building my resilience. My disabilities are a part of who I am and how I live my life. As I learn to love all of myself, I seek organizations that also provide services in a way that does not reflect pity or charity thinking. I work to change systems to build inclusive communities that support all of our gifts and talents. I also surround myself with people who love and support me and other people with disabilities who have disability pride. This is good, lifelong, important work.

Everybody Poops

By Aimee Sterk, LMSW, MATP Staff

the cover of the book "Everybody Poops" with pictures of a person, a horse's butt, a goose, and an apple

As a new mom, I’m pretty familiar with poop–all kinds of poop. And I’m pretty aware of my son’s pooping (or not), when he has a poopsplosion, what he’s eating that is causing what reaction… From the very beginning in the hospital, the medical professionals tell parents about tracking health and bowel movements. I even have the book Everybody Poops on my Amazon wishlist. I want my son to view pooping as something healthy that everyone does–albeit sometimes in different ways. I don’t want him to have anxiety or shame about pooping which can lead to lifelong digestive problems. Yeah there’s a lot of poop thoughts up in here.

In our office, we tend to talk about poop a lot too and bowel programs… and they came up again at a meeting yesterday. I mentioned how I frequently talk about toilet aids when meeting with professionals and teaching about low tech AT for community living. Often, I’m met with nervous laughter. That bugs me.

Rant warning here. Look, we as a society have made poop a taboo topic, but in doing so, we’ve made it so people with disabilities who need AT to assist with toileting, are so ashamed that they don’t ask for or get information about this need. Parents of young adults with disabilities continue wiping their sons/daughters for years when they could be using AT to wipe themselves. What happens when you go off to college or move out on your own and you’ve never learned to wipe yourself? There’s already plenty to learn about budgets, laundry, meal prep. For goodness sakes, people with disabilities should learn about AT for the bathroom when their peers are learning to wipe themselves. Pooping is an important, daily (for many) activity. People need to do it to stay healthy and out of the hospital. Professionals and people with disabilities need to drop the shame game and talk about going to the bathroom–and what devices and supports are needed to go to the bathroom as safely and as easily as possible. People who want to be able to wipe themselves need to be able to get information on devices that can help. People who can’t wipe themselves and need assistance doing so, need information on personal assistance care, safe toileting options, and AT for the bathroom–a note from friends in the know, bidets can be amazing!

Stop with the poop shaming!
Let’s learn a lesson from each other and from what I’m trying to teach my son. Pooping matters. Everybody poops. There are great AT items that can help with pooping and with wiping.

And for the AT info piece–this was previously published in our blog and its worth repeating here:

the freedom wand device with toilet paper inserted in the grasping end and a hand holding it

Many people invent things out of a necessity they have themselves. This was the case for Deborah Tacoma. After an accident where she broke her back, Deborah found she could not twist and reach to wipe and take care of her personal hygiene needs in the bathroom. She did some research and found various items but didn’t find one that fit her body size, arm length and reduced finger strength—so she invented one, the FreedomWand ®. It is available on Amazon.com for $10 less than the FreedomWand website.

In promoting her product, Deborah has talked to many people with many types of disabilities that have trouble wiping and taking care of all their bathroom needs but are ashamed to talk about it with their doctors or others that might have helped them find AT—people are ashamed and suffer for that shame risking skin breakdown, pain, and infections.

The FreedomWand® is an easy-to-use multipurpose, portable toilet tissue aid that can also be used to hold a razor, loofah, or ointment applicator. It has extendable reach of up to 25 inches or as few as 9 and can be taken apart and stored in the carrying bag that comes with it. The bag and wand can fit in a backpack or large purse.  Instead of a push-button release which can be difficult for some people, it has a slide button.

Our Small Changes Big Differences kits have FreedomWands® for you to see in-person and decide if they might work for you. The kits also have dozens of other devices to help people with disabilities live in the community. Find the kit nearest you and give them a call to set up a demonstration. Deborah also has a video showing how the product works.

And for what its worth, also from my new parent experience, pregnancy constipation is no joke and squatty potties really do help with constipation and that crew understands that we need to talk about poop–and even have fun with it.

What do you think? Can you help break the poop shaming cycle society has created? What AT do you use or have you heard of that helps with toileting?

 

 

Domestic Violence, Sexual Assault, and AT

By Aimee Sterk, LMSW, MATP Staff

MDRC staff members have been working on a multi-year collaborative grant from the Office of Violence Against Women in the U.S. Department of Justice. Through that work, all of our staff has been learning about responding to, preventing, and connecting to the services and supports available, for people experiencing domestic violence/sexual assault.

People with disabilities experience sexual assault and domestic violence at a far higher rate than the general population and these violations can also lead to disability. As a community, we as people with disabilities need to be aware and active in both preventing domestic violence and sexual assault and in responding to it.

How does this all relate to assistive technology (AT)?

In a variety of ways:

  1. Perpetrators may withhold people with disabilities’ access to needed assistive technology as a means of control.
  2. Perpetrators may monitor conversations of people with disabilities, especially people who are Deaf and use communication devices. This is another means of control.
  3. People with disabilities who experience domestic violence or sexual assault may need access to AT devices emergently as they move to shelters or other spaces for safety. Devices may be left behind and AT/additional personal attendants may be needed to deal with the fact that many times perpetrators are family members or caregivers who people with disabilities relied on for support. Loan closets of devices  and the ATxchange website are potential resources for use of devices while sorting out living situations, accessing services and supports, and making safety plans.
  4. Many shelters are not accessible and need to develop ways to help people with disabilities access AT when they flee a situation.
  5. Sexual Assault and domestic violence program staff may not be aware, or capable of, assisting people with disabilities who have intellectual, processing, or communication disabilities due to their own lack of knowledge and skills. Access to assistive technology can help.
  6. Apps for PTSD can be useful to survivors of domestic violence and sexual abuse. For example, I am a sexual abuse survivor and use Gratitude! for mindfulness and PTSD Coach.
  7. There are apps and devices for safety like Circle of 6 which lets you send out messages to your friends like “come get me” and gives your GPS location. Circle of 6 also can connect you to resources.
  8. Survivors who are Deaf and hard of hearing need to know their rights and the systems of help available. Some communication and relay systems keep transcripts of conversations automatically unless the user specifically requests that they don’t. Perpetrators have also impersonated Deaf survivors through electronic communication methods so shelters and survivors may want to develop codes phrases.

Do you know about domestic violence and sexual assault services in your community? Are they accessible? Have they done an accessibility audit? Are they welcoming and able to serve people with all types of disabilities?

Looking Back

By Aimee Sterk, LMSW, MATP Staff

Our son, Theodore, was baptized Sunday. Standing in front of the congregation, I was brought to tears remembering the journey we’ve been on with this wonderfully supportive group of people holding us up and getting us through. We’ve been through so much loss and grief and I’ve been through so much depression and PTSD.

Me next to my husband who is holding our son who is trying to eat his foot. We are next to the baptismal font. Our minister is crouched down in front of it talking to the congregation's children who are gathered around to hear about the meaning of baptism and to welcome Theo.

We lost two babies. My history of sexual abuse by my pediatrician combined with these losses and the exams and treatments created the perfect storm for PTSD. We’ve been through a lot. Too much to allow myself to even remember.

So–this weekend was joy and remembrance and sorrow. This week I find myself looking back too. Through some kind of glitch in the cloud, we’ve lost the public posts on our blog from the last several years. I have draft copies of most of mine saved in Dropbox. In 2015 at this time of year, I was suffering through the deepest depression I’ve ever experienced myself. I could have been hospitalized but was avoiding it. All my back up systems were breaking down. I wrote a blog desperate to find some AT or answers that worked. I want to share that blog from history here and say that even the best plans and tiers of support can’t always “fix” things. AT can help on the way back or sometimes to prevent a path down, but if you are at a lowest low, get help. Reach out and get help. My best friend and my therapist, a work colleague and my husband got me through until I could get better. If you are depressed and suicidal, tell someone and keep telling until the right team for you appears and helps you out.

In the meantime, here are my thoughts from the summer of 2015:

What do you do when your AT and mental health recovery plans fail?

I have AT, I have a WRAP Plan (Wellness Recovery Action Plan). I have lists of things to try and people to call. I have the PTSD Coach app. I have the Lotus Bell app. I have At Ease. I have my WRAP plan in an app. I have friends and family that love about me pre-programmed in my PTSD Coach app. I have co-workers who care.

And then there is depression—and for me lately PMDD like I’ve never had before—with every single diagnostic symptom. Two miscarriages, chemo, grief, infertility treatments, family challenges, fertility meds that affect my mood and cognition, PMDD, PTSD–they are all throwing their spears at me, and last week (and actually a little today) I was some kind of open-season, willing target. I was miserable, tired, hopeless, and feeling worthless—like I deserved every last bit of the awful I was feeling. I told my husband he should leave me, that I wasn’t worth his time and love. I told myself I didn’t deserve to be a mom. I looked for a job collecting carts at the grocery store because I didn’t feel worthy/up to the job I’ve loved for more than 11 years. Yoga didn’t help—started angry, ended angry. Crying didn’t help. I hated myself, my job, my marriage. I wanted to quit my job and my marriage. This month I wasn’t suicidal, but last month I was.

I read an article describing depression and thought—wow she gets every last bit of this and I feel every last bit.

Antidepressants weren’t helping. Apparently, the one I’m on doesn’t help with PMDD and I don’t want to add more while trying to get pregnant.

I wanted to throw my apps and iPhone in the fire along with my journal and lists of self-care options.

All the AT, all the well-meaning people and plans, all of it made me angry and sad. I let my therapist know I was in trouble but didn’t leave a door open for her to help—on purpose.

So then what do you do? What do you do with this kind of hopeless depression?

I knew this was PMDD. I knew I just needed to make it 24-48 hours—and hopefully not destroy myself and my relationships in the meantime. What do you do when it’s not PMDD and nothing seems to be working?

I considered partial hospitalization but dismissed it—having worked in mental health hospitals I didn’t think it would be all that therapeutic.

I went to yoga anyway. I took naps. My fishtank became AT a little—watching the fish was calming and I didn’t get angry doing/considering doing it. My dogs and cats stuck by me even as I got angry at everything and then sad and then refused to do other helpful things. I waited for it to pass. I took it out on my husband. I took it out on myself.

Thursday was bad. Friday was devastating. Saturday I mostly could hold it together. Yesterday it started to get better. Today is kind of ok.

Friday I was sure life was always going to be this way—except that I knew deep inside that I just needed to make it one more day.

Months ago in the depths of post-partum depression after losing our first child, I didn’t know deep inside that I needed to make it just one more day. The world was a deep, dark abyss. It didn’t get better the next day or the next, though then too I wasn’t suicidal, so that was the last sliver of hope I had.

Really then what do you do? When the meds aren’t helping, the plans make you want to barf, you want to scream and cry and push all the well-meaning people away? How do you hunker down and get through? Somehow I did but each time the waves come crashing, I wonder if it’s possible to make it to the other side.

Have you found things that work that you can make yourself do? Do you use any AT (apps, soothing sound machines, light therapy boxes) for depression that continues to work for you even when things are really bad?

***My take away in case I’m ever feeling like I did in 2015 again? Nap, spend time with pets, ignore all the AT apps if they are making things worse, consider a fishtank as AT, make yourself do one thing positive (yoga, a shower, a walk, sitting outside), and call for help. These are the things I will do. What works for you?

 

Go Green!

By Aimee Sterk, LMSW

I’m behind this year… way behind. With a new baby (5 months is still new right?) and going back to work after leave, I have been short on time for anything at all and have neglected my garden. My colleague Laura had a great blog about getting out and working in the yard, which is also a bit of a disaster at our house. I prefer gardening, so I will focus on just the garden. I usually put seeds in early May. Its early June—-but there is still time and a lot of AT that can help.

I plan what I grow based on what my family likes to eat, how much space I have, and potential cost savings. For example, we eat a lot of carrots and onions but I find them harder to grow and relatively cheap at the store, so I don’t grow them myself. I do grow herbs, kale, fancy greens/salad greens, and heirloom cherry tomatoes. This year I’m also growing sunflowers—more for the beauty and the birds than for cost savings.

a 6 inch tall raised bed with 5-6 tomato plants in cages and some weedy looking chard and small kale seedlings surrounded by a chicken wire fence. Some hedge roses are in the background
One of my raised beds with volunteer kale and chard and tomato seedlings planted this year. I make my own compost and as you can see, there are lots of egg shells in it this year. I heard the calcium is good for tomatoes.

I grow my plants in raised beds or containers right next to our driveway—seeing them when I come and go reminds me to water them. Raised beds and containers provide a variety of benefits:

  • If your soil is poor, it provides a method for adding good soil
  • It allows for people with physical disabilities to more easily access the beds—they can be raised to counter height if need be
  • It allows for better drainage

My raised beds are not very raised and are starting to decompose so I think this is the last year for them. I have chronic upper back pain and, since giving birth, have also struggled with low back pain so new, higher raised beds are in the plans for next year.

a half a dozen waist high raised beds overflowing with vegetables and flowers
The Ann Arbor CIL hosted a community garden for years. Their raised beds are gorgeous–you can sit on the edges to work them or lean over just a bit. They are my nirvana raised beds.
two women, one using a wheelchair, work on a strawbale bed with tomato cages sticking out of the top
My cheapest option for higher raised beds next year are strawbale beds.
A man using a wheelchair with a raised bed that he can pull his wheelchair under--a tabletop raised bed
Ann Arbor CIL also had some tabletop raised beds that you can pull a wheelchair up to and under. Glen Ashlock,a former staffer and AT guru is pictured here with the bed.

Raised beds and container gardening don’t have to be costly either. A cheap, large pot or 5-gallon bucket on some pavers or bricks make wonderful, small raised beds that would be great for greens or potatoes or even small tomatoes. Straw bale gardens  are cheap, easy ways to create a raised bed and use the decomposing straw to feed your plants. There is a great Facebook group called the Container Gardening Alliance that provides lots of tips and tricks for container gardening.

over the door canvas shoe caddies are filled with dirt and plants are growing out of each shoe caddy opening
An ingenious example of an inexpensive, space-saving, accessible container garden.

Adapted garden tools and watering systems also increase access to gardening. Hand tools can be built up with bicycle grip tape or pipe insulation. Handles can be lengthened or shortened as needed to give people the reach they need. Drip systems or sprinklers attached to platforms with hoses run to them that do not obstruct pathways prevent the need for carrying heavy watering cans.

handheld tools with built up grips and ergonomic handles

You don’t need a yard to have fresh herbs, flowers, and vegetables. A sunny window and some pots are all you need—and the plants will brighten your day and clean your air for you.

There are so many ways to make gardening accessible. What tips and tricks do you use? What are you growing this year?

Be sure to check out our accessible gardening webinar that covers all aspects of accessible gardening: tools, pathways, beds, and container gardening. Go green thumbs!