Advocacy Help for AT

By Aimee Sterk, LMSW, MATP Staff

A manual wheelchair reclined back showing the various angles of the tilt in space featureMy friend contacted me last week asking about the process for working with a nursing home to get his father, a resident in the home, a new wheelchair. It seems the nursing home suggested a very specialized wheelchair to meet his father’s needs, but when the home was told they had to provide the wheelchair out of their regular per diem rate, they were now suggesting a far cheaper, inferior option. That made me think it was time for another blog about advocating for AT needs.

There are a couple options to help you advocate for your needs for assistive technology (AT) or durable medical equipment (DME) in Michigan.

If you have a MI Health Link Plan (a combination of Medicare and Medicaid) the MI Health Link Ombudsman Program is here to help you access the DME you need if you have been denied coverage or are having trouble getting what you need. Call them directly—lawyers answer all the calls and are ready to help—at 888-746-6456. It is also possible to contact the Nursing Home Ombudsman program if the nursing facility is not providing needed AT at 866-485-9393 or 517-827-8040 for the State Long Term Care Ombudsman.

If you need help getting AT or DME through your school system, community mental health, the MiChoice Waiver, Medicare, Medicaid (or Medicaid funded nursing facility), or Michigan Rehabilitation Services (if employment related), contact Michigan Protection and Advocacy Services’ AT team at 800-288-5923. Michigan Protection and Advocacy Services receives direct federal funding to help people with disabilities of all ages access the AT they need.

The following is from Justice In Aging:

“Consumers with both Medicare and Medicaid face recurring problems getting approval for Durable Medical Equipment (DME), getting repairs, and finding reliable suppliers. DME includes many vital items, such as wheelchairs, walkers, hospital beds, home oxygen equipment, and even diabetes test strips used with a glucose monitor. ”

Some of the obstacles in getting access to DME include:

  • Conflicting DME approval processes for Medicare and Medicaid
  • DME access problems for people who have Medicaid first and then become eligible for Medicare
  • Getting coverage for repairs, particularly getting Medicare coverage for an item originally obtained through Medicaid
  • Differences between Medicare and Medicaid approved suppliers (many providers are approved for one program, but not the other)”

It is so important that people access the equipment they need to live in the setting of their choosing. Please, use the advocacy services to get the AT/DME you or someone you care about needs.

Have you contacted Michigan Protection and Advocacy Services for help with getting AT? Have you used an ombudsman program? What was your experience? What other advocacy tools have you used?

 

All I want for Christmas is some new AT (And I want to share this other article too)

By Aimee Sterk, LMSW, MATP Team Member

This year for Christmas, I am asking for the Fisher Wallace Stimulator device. I heard about it from my therapist. According the website, it uses electrical impulses to stimulate the brain to produce more serotonin and melatonin while reducing cortisol. It can be used for depression, anxiety, and insomnia. Fisher Wallace notes that the device is FDA cleared and has been used in many research studies.

The device is shaped like an elongated deck of cards and has a pyramid on the front with four lights in the pyramid indicating the strength of the neurostimulation and two cords attached to two sponge electrodes.
The Fisher Wallace Stimulator and a man using the device with the moistened sponge electrodes applied to his temples and held in place by a headband. Image from the Daily Beast: https://www.thedailybeast.com/fisher-wallace-stimulator-behind-the-do-it-yourself-shock-therapy

All of this sounds so good to me right now. I was on an SSRI while pregnant with my son and it really helped me combat depression and anxiety associated with pregnancy, losses, and PTSD while I was carrying him. I took half the lowest dose of the medication prescribed. Still, just as I am highly sensitive to meds, it seems my son is too, and he had withdrawal symptoms from my medication after he was born. This was devastating to me at a time that we were already in crisis as my son had to be in the NICU after delivery for another condition.

This pregnancy, I’m determined not to take an SSRI, but am again experiencing significant anxiety and depression. I had looked into non-pharmaceutical options when pregnant with my son (specifically TMS) but the cost was very high, sometimes I met the clinical criteria and sometimes I didn’t, and the commitment of daily, somewhat painful treatment, for 4-6 weeks, at a facility across town seemed overwhelming.

So, this year, I want to try the Fisher Wallace Stimulator as a non-invasive and less costly option than TMS (it still is expensive at $699). I do wonder if I can commit to using the Fisher Wallace twice a day for 20 minutes though–with a 1-year old and another baby on the way along with a full-time job, life is pretty busy right now.

I put the word out there to coworkers, friends and family to see if anyone I know has used the device. It turns out the husband of a friend is currently using it to treat his ADHD and has seen improvements as he tries to get off of his medication.

I also did some googling. In addition to the company’s website, if you are interested, you may want to check out the guest blog on Scientific American that details another user’s story and has links to some relative research. You may also want to check out the reviews on Drugs.com which tend toward neutral or negative with some people wondering about a placebo effect.

Currently, the device is out of reach financially for me, but possibly, when my Flexible Spending Account balance refills January 1st, I’ll get a prescription and consider giving this device a try (unless Santa delivers one first). In the meantime, I’m tracking my mood, taking my vitamin D, practicing mindful self-compassion and the lovingkindness meditation.

Have you tried the device? Did it make a difference in your life? What AT or techniques have you used for depression and anxiety when medication wasn’t an option?

And speaking of mental health, I have to share this amazingly good article that I learned about from Disability Network Southwest Michigan staff. It deeply speaks to me and has also touched colleagues and friends—a must read for people with mental illness and allies. It covers the dangers of being “High Functioning” (the authors words, ones I don’t use myself) mentally ill and touches on the damage of disability hierarchies and the intersectionality of mental health/disability and other identities.  Why I’m Done Being a Good Mentally Ill Person.

Weighed Down for Better Sleep

By Aimee Sterk, LMSW, MATP Staff

a cartoon person awake in bed with bloodshot eyes, sheep jumping over them and a cat snuggled in on their lap.I have a long history of battling insomnia. Lately, I have been having even more problems sleeping following a series of life traumas and increased anxiety. My therapist suggested trying a weighted blanket. I had previously heard of weighted blankets as calming options for people on the Autism Spectrum. I never knew they have a variety of other uses.

According to an article in Psychology Today,

“Weighted blankets are one of our most powerful tools for helping people who are anxious, upset, [and feeling out of sorts],” says Karen Moore (link is external), OTR/L, an occupational therapist in Franconia, N.H. These special blankets are filled with weighted pellets, which are sewn into compartments to keep them evenly distributed. Weighted blankets are also sometimes marketed for general use as an aid to sleep and relaxation.

“These blankets work by providing input to the deep pressure touch receptors throughout the body,” Moore says. “Deep pressure touch helps the body relax. Like a firm hug, weighted blankets help us feel secure, grounded, and safe.” Moore says this is the reason many people like to sleep under a comforter even in summer.

What a revelation!  After posting on Facebook, to friends inside and outside the disability community, looking for local resources to try a weighted blanket, several  friends chimed in that they too thought these blankets would be helpful for them. Some even said they were using one without realizing it—heavy comforters were their preference all year. One friend, who runs an Autism Center, connected me with some online options for buying weighted blankets and making your own. Another connected me with Christie DePrekel at Peaceful Product . These chance connections via social media have changed my life!

Christie of Peaceful Product is local and offered me several weights of blankets to try as I was hesitant to commit to the investment without knowing if the blankets would help me—though I had a feeling they would. I stopped by later the same day to pick up the sample blankets.

I tried a 15 pound and a 10 pound blanket and found I far preferred the heavier variety—and that my sleep and anxiety were much improved. I slept soundly (for me) the night before I had to give a speech to a nationwide audience—which normally would not be how I’d sleep before such a big event. I have found I also like sitting on the couch with the calming weight on me.

Christie mentioned that some members of her family have sensory processing disabilities, which is why she started making the blankets herself—looking to make quality items to meet their needs. Talking to her more about sensory processing, I realized that I too am sensitive to sound, pressure, smell, sight, and touch. Since I was a child I remember self-soothing by rolling my hands back and forth over a favorite blanket. I also achieve great peace when watching repetitive things like sprinklers or machines at work. I have met others friends who have the same type of soothing response. I also have created my  own type of squeeze machine having my partner hug me hard and/or lay on top of me while I’m on the floor, comforted by the intense pressure (until it’s hard to breathe). I wonder if it is all related?

Christie has seen weighted blankets help people with Autism, Aspergers, ADHD, Anxiety, PTSD, Insomnia, Sensory Processing Disorder, and Restless Leg Syndrome.

After deciding I definitely wanted my own weighted blanket, I met Christie at a fabric store and picked out some microplush fabric to cover my blanket (you should have seen me at the store with my eyes closed plunging my hands into the bolts of fabric to test their softness and soothingness). I then specified the size and weight I wanted, and one week later, my blanket was ready.

Weighted Blanket
I choose a colorful pattern of birds for one side of my giant weighted blanket and a lush blue for the other side.

I now sleep with it every night. The pressure is comforting on a primal level. I have trouble with night sweats, so the lightweight microplush has been helpful (the sample blankets were a thick fleece). If the weight didn’t affect the heat of the blanket at all, I would have gotten even heavier of a blanket.

The formula commonly used to choose the weight of the blanket is 10% of the body weight plus 1 or 2 pounds for children.  In older teens and adults this formula can be quite heavy so trying different weights like I did might be your best option. I found that in my arms a 10 pound blanket felt very very heavy.  But, once that weight was spread out over me, I thought it was way too light.

Have you tried a weighted blanket or have you been doing your own version of weighted blanket sleeping without even realizing that is what you were creating on your own?

Do you think something like this might work for you or someone you know?

The Nights are Longer and SAD is Here

By Aimee Sterk, LMSW, MATP Staff

I can feel the change in the seasons and I’m not enjoying it. Shorter days and longer nights start the cycle of Seasonal Affective Disorder (SAD) for me. This time of year I start feeling the energy drain and the pull of my bed increase. According to the Mayo Clinic, the causes of SAD aren’t entirely known but there is felt to be a genetic component and a chemical component the chemical components are related to reduction in sunlight and a corresponding reduction in serotonin and melatonin. Lower serotonin can trigger depression and melatonin helps with sleep.

The risk factors for SAD include living in places like Michigan—the further you live from the equator, the more common SAD is which is likely due to the decreased sunlight during winter.

Luckily for me, there are some treatment options involving assistive technology (AT) and lifestyle changes that really help me:

Light Therapy

light therapy boxA couple of years ago, when I was complaining about the dark falls and winters in Michigan and my belief that I had SAD, my coworker told me about light boxes. Each morning I start the day with 45 minutes in front of my lightbox. In fact, I’m writing this blog with it on. The bright light mimics outdoor light and appears to cause a change in brain chemicals linked to mood, most likely increasing serotonin. Studies have found that light therapy is effective for SAD and may be effective for nonseasonal depression.

I position myself 12-24 inches from the lightbox and have it off to the side of my computer monitor. I use it in the morning almost every day.  My box has bright white full spectrum light and produces 10,000 lumens. In the past, many SAD light therapy boxes were using blue light wavelengths, but recently research has indicated that broad spectrum light is more effective. For the past several years, my lightbox has helped make my SAD much more manageable.

I want people to know about possible side effects of light therapy and contraindications so I’ve copied some warnings below to be very aware of:

Are there any side effects or conditions where light therapy should be avoided?

“Individuals whose skin is especially sensitive to light, such as those with lupus (systemic lupus erythematosus) should consult a physician before attempting light therapy for any condition. You may be advised to avoid light therapy if you have a history of skin cancer or if your eyes are sensitive to light because of conditions such as glaucoma, cataracts, retinal detachment and retinopathy. In addition, light therapy has been reported to lead to mania in some patients with bipolar disorder (manic depression) and to cause suicidal thoughts. For these reasons, patients using light therapy boxes should report any mood changes or disturbing thoughts to their health care practitioners.
Certain drugs can increase sensitivity to sunlight and may cause skin reactions as a result of light therapy. These include antibiotics, anti-inflammatory drugs, some anti-histamines, lithium, the supplement melatonin and the herbal remedy St. John’s wort. If you’re taking any drug or supplement on a regular basis, check to make sure it won’t cause a reaction to light therapy.

Some ophthalmologists have warned that blue light, part of the full spectrum of light used in light therapy, could damage the retina and increase the risk of age-related macular degeneration, a progressive eye disorder that is the leading cause of blindness in people over the age of 55. So far, however, no research has confirmed that risk.

If you’re bothered by the glare from your light box, the blue light is probably responsible. You can screen it out by wearing special eyeglass lenses or clip-ons during treatment. There are also light boxes available that filter out the wavelengths believed to be most harmful.

Other side effects of light therapy are minimal. Some patients report headaches, eyestrain or eye irritation or nausea when they begin treatment, but these effects usually are mild and disappear after a few days.

Exercising

In this case, my DVD player and online streaming device are AT. My therapist informed me that exercise boosts serotonin and I find it helps me feel better about myself while reducing anxiety and stress. I regularly start my day with an exercise DVD or a streaming program when it’s too cold, dark, wet, or snowy outside to exercise out of doors.

Getting outside

There were brief periods of sunlight this past weekend and I made sure to get outside and hike and work in the yard. The Mayo Clinic suggests that getting outside within two hours of waking in the morning is most effective and that even on cold and cloudy days, getting outside is helpful.

Brightening my home and office

I make sure to open my drapes and have installed solar tubes in darker areas of my home (our hallway). I have painted the walls in our darkest rooms bright, light colors. When I’m up before the sun, I turn on all the lights in the area of the house that I am in.

Taking a vacation someplace warm and sunny

Florida-Mangrove-forests-in-the-south-of-the-peninsula-of-florida
One of my favorite vacations was to Florida. I especially loved paddling the mangroves with my husband in the bright sunshine and warmth in the middle of winter.

I know that I hit my limit of coping with Michigan weather every February so I save up all year to go someplace warm and sunny many years. If only I could find a way to bill that to my health insurance. Funny thing is, the article from the Mayo Clinic even recommends taking a trip as a way to manage SAD, Take a trip. If possible, take winter vacations in sunny, warm locations if you have winter seasonal affective disorder .”

Do you have SAD as well? What AT or strategies have worked for you?

 

Butterflies, Bracelets, and Rocks

By Aimee Sterk, LMSW, MATP Staff

My Facebook memories have been showing me that October is often a very hard month for me with many anniversaries of stressful events. I want to share a blog post I wrote two years ago as it came up in my Facebook memories as well and sparked a lot of discussion on my wall.

So here it is–how I was doing two years ago, and what AT got me through (and I’m still using these tools and techniques):

I have PTSD and have been triggered a lot lately. I can sense it happening. Something reminds me of a traumatic event and I start reliving it in my head. I started seeing a new therapist for EMDR (Eye Movement Desensitization and Reprocessing) after my old therapist left her practice and no longer takes my insurance. I dreaded having to start over—and having to share with her what has happened to me. Talking about past traumas re-traumatizes people and exacerbates PTSD. Luckily, my new therapist knew this and didn’t want to dig in—just wanted some generalizations, but as we were getting started, she could tell that I was going back to the experiences—and she had some great new techniques that helped me self-soothe enough so that I could interact with her. I’m now adding the Butterfly Technique and a large egg-shaped rock to my Calming Techniques and Items Toolbox in addition to the bracelet and weighted blanket that were already in there.

The Butterfly Hug Technique involves crossing your arms over your chest and linking

Butterfly Hug
A webcam shot of me holding my hands in the position I use for the Butterfly Hug.

your thumbs at your sternum. Your fingers are pointed up towards your collarbones, not towards your arms, and the finger tips rest just below or on your collarbones, palms facing down against your chest. You then pat yourself in this position for 1-3 minutes. This bilateral stimulation provides a sense of calm. It helps ground you and keep you in the present moment. It was originally used in Mexico helping survivors of a hurricane and has been used with inmates, many of whom have a trauma history, and others with PTSD. I put an image of a butterfly on my phone to remind me that I can do this technique any time. There is a great youtube video on the butterfly hug technique created by Debbie Augenthaler.

Rock
This snowflake obsidian rock fits well in my hand and offers enough weight and size to register strongly with my brain as I pass it back and forth between my hands. It helps with mindfulness.

The other technique she taught me uses a super low-tech piece of AT (assistive technology), a 3-4 inch egg shaped rock that fills the palm of your hand. She instructed me to take this rock (hers was polished marble) and pass it back and forth between my hands. I felt stupid at first, but then realized it was helping and did it for my entire appointment. I asked her what the technique was called and if the size of the rock/weight were important. She said it was a type of Brain Gym technique that also promotes bilateral brain stimulation. The size and weight are somewhat important—the rock needs to be big and heavy enough to register in your hands.  I found a large enough egg at a local store that carries crystals and meditation supplies. I find it helpful to use this technique to reconnect and calm—it allows me to return to mindfulness, being in the present moment and noticing my thoughts without judging them. Mindfulness is universally beneficial and helps with chronic pain, depression, anxiety, and stress and promotes well-being. There is now a free online course for Mindfulness Based Stress Reduction (other courses in person and online are $350-$450). I’m going to give it a try.

metta-bracelet.jpg
The different colored stones in this bracelet help me remember the different pieces of the lovingkindess or metta meditation.

While I wrote about my weighted blanket before, I haven’t shared about my loving kindness bracelet. I originally learned about loving kindness meditation as a mindfulness practice—a way to become present, decrease stress, and increase positive emotions and well-being. There are dozens of studies on the benefits of a loving kindness practice. I had been practicing it irregularly, especially when I was experiencing insomnia, and then more regularly after attending a workshop by Kristin Neff, an expert in self compassion. The loving-kindness meditation is a way to tap into the calming practice of sending love to yourself and to others and the world. I had trouble remembering to stop and do the loving kindness meditation and make it a part of my daily routine until I added my loving kindness/metta bracelet I got from Jan Lundy, an author, speaker, and spiritual director. Jan co-designed a bracelet with four different kinds of stones to represent each of the phrases you repeat in a loving kindness meditation. I can sit and meditate and use the stones as keys to remember:

May I be safe

May I be strong

May I be happy

May I live with peace and ease

I work my way around the bracelet first a couple times for myself, then for others. Jan has full instructions on her website. When I am anxious and overwhelmed, I need a visual cue to help me reset. Having a reminder on my wrist does just that, and then guides me in my practice. Jan’s bracelet is beautiful, but if cost is a barrier, you could go to a craft store or raid your closets and jewelry boxes and pick out beads with meanings for you and string your own.

What AT, techniques, and resources do you tap into for stress, anxiety, depression, and self-soothing?

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!