Walk A Mile In My Shoes

This past Saturday, Chip, Ronnie, Ashley and I participated in the Broad Street Mile Fun Run. The event had 16 different one mile runs, each supporting a different charity. Our run, the No Limits Mile, supported Sportable, the organization that offers many different sporting opportunities for people who are blind or have physical disabilities. Sportable is the group that sponsors Ronnie's wheelchair basketball, fencing, and lacrosse teams.

The day was perfect - overcast and about 70 degrees. The one mile route was flat and straight - a very good thing considering it has been probably 20 years since I did any running at all.

This event was a starting point for us. Our goal is to participate in our city's 10k one year. It probably won't be this year, but we are hoping for next year!!

Our 15 Minutes

I was interviewed yesterday about the issue I wrote about Thursday - the backlog of Medicaid reauthorizations.  Here is a link to the story that appeared on our local news station:

State Backlog of Disabled Services Hurting Families

How Will It Be Made Right?

My son, Ronnie, receives respite and personal care services through our state's EDCD (elderly and disabled consumer directed) Medicaid waiver. He receives these services because he was screened by the agency that administers the program and found to be in need of the services. The only other alternative, according to their screening, was placement in a nursing home. Because of his spina bifida and kidney disease, he needs full assistance with bathing and other personal care tasks as well as with his bowel and bladder management program. The services, which have been authorized for many years, allow a personal care attendant to assist with those things. The personal care attendant is paid by a contractor organization in agreement with our Medicaid agency.

Everything has been fine for years.

But for whatever reason, the annual reauthorizations for everyone in the state receiving services under the EDCD waiver got backlogged. So backlogged that many people went without services for months. Ronnie was one of the lucky ones because his services have only been stopped for about three weeks now.

It's not that the people won't get reauthorized. They will, but for some reason a gigantic backlog occurred. What I think our Medicaid agency hasn't realized, or refuses to acknowledge, about this situation is just how many people have been affected, and it's not only those people authorized to receive services.

The whole "let's keep people in the community rather than institutions" movement by providing home and community based services relies on four sets of players - the medicaid agency, the service facilitator who is a person or company that helps translate what is approved into what happens for a person with a disabilitiy, the person with the disabilities serious enough to qualify for nursing home placement but who wishes to remain in the home, and the people who provide the services - the personal care attendants and respite providers. And in a great many situations, the family of the person with a disability also enters the equation.

So by allowing a backup of authorizations, our Medicaid agency is affecting the ability of our service facilitators to run their businesses, which results often in a loss of business. It goes without saying that the person with the disabilities is affected because they no longer have the supports they desperately need to keep them out of an institution. And the service providers, those wonderful folks who do things like manage bowel and bladder programs for a mere $9 an hour, lose their income, can't make car and house payments, can't provide for their families, and must move on to another job. Thus the person with a disability is affected yet again because finding personal care attendants is in no way an easy job. And finally, if the person with a disability has family support, those folks are affected because they may be having to pay out of pocket (if they even can) to keep the personal care attendants, all the while managing their own panic at the thought of their loved one being institutionalized.

Our Medicaid agency has said publicly that they intend to have the backlog handled by this Friday, September 27th. We'll see, but I have some questions for them. Why did this happen? Why weren't we notified before our attendants submitted time sheets which were denied? What are you going to do to make sure this doesn't happen again? And, what are you going to do to make this 'right' for all the people with disabilities, their families, their attendants, and their service facilitators who have suffered?

Special Exposure Wednesday

We visited the butterflies at our local botanical gardens this past Sunday. It was a beautiful afternoon, and the butterflies were very active. Ashley loved that they were flying all around her!

School Doesn't Approve of Pajamas

Finding clothes that Ashley wants to wear is such a challenge. Because of her deafblindness, she is very sensory defensive. In other words, if something that touches her body doesn't feel just right, she wants nothing to do with it. As a young child, she participated in a 'brushing' program, a technique taught by our occupational therapist whereby Ashley's skin was brushed several times a day with a very soft surgical scrub brush. And that helped some, but she is still pretty picky about what touches her skin. So, each season brings new challenges to find clothes that she will allow to be close to her skin.

The basic rules of "Ashley Dressing" include nothing with buttons, zippers or other kinds of fasteners and everything must be of a soft fabric, teeshirt-like material is best. Throw into that mix that she is a teenager and appearance is very important to her, and you can imagine the challenge to find just the right clothing, and especially clothing that is affordable.

I've been lucky in the past to find both short and long pants at Walmart that are teeshirt-like material and have elastic waists. Since she is small, I also need to find clothing to fit a petite frame, and Walmart usually carries petite sizes in both those shorts and pants. That was until this year. I have searched several stores and online many times, and they just don't seem to be carrying those particular items this year. I can find leggings all over the place, but those are not her favorite and it becomes challenging to wear those at school (she must have an extra long top to copy her bottom if she wears leggings).

So, cooler weather is upon us and shorts won't work too many more days. I've tried Amazon and have found a few things, but they are ridiculously expensive. Yoga pants would work if I could find some that came up to her natural waist (not sitting on the hips - she doesn't like the feel of that) and weren't too expensive. I haven't found those yet either. The brand of stuff that Walmart used to have was White Stag. I've been to their website also with no luck.

Any ideas you might have would be most welcome. If we don't find some long pants soon, I may have to send her to school in pajamas!!! (and pajama jeans won't work because they have little metal pieces around the pockets...)

I'm Impressed

I've always liked North Carolina.  My mother was from North Carolina, and some of my happiest memories growing up were from visits to the lovely, green state.  And, of course, my all time favorite vacation spot is the Outer Banks of North Carolina.  Here's just one more reason this state impresses me, impresses me enough to consider retirement there...

Adults with intellectual disabilities enjoy their book club

"Not In My Neighborhood"

Because of a settlement agreement with the Department of Justice, my home state, Virginia, is tasked with moving residents from institutions into communities. I don't want to debate whether that is a good idea or not, but I did want to share the reactions of many people as group homes move into their neighborhoods.

These group homes will house primarily people with intellectual and physical disabilities. These group homes are NOT halfway houses for people recovering from alcohol or drug dependency. They are a way for people who have been locked away to enjoy the feeling of community and all the perks that come along with that.

But not everyone likes the idea. Check out this piece posted by a local news station in Virginia Beach, Virginia. Pay special attention to the comments that have been left, and then tell me what you would do if your loved one was one of the people moving into the community.

More Group Homes Coming to Virginia

Let's Cheer!

This has made me smile today!

Cheerleader has Spirit...and Wheelchair

Special Exposure Wednesday

Some of the kayaking skills are just a little tougher than others....

Doctor #1

Yesterday was the first of two Social Security Disability mandated doctor visits for Ashley. Even though they have medical records from Ashley's eight other doctors for the past 16 years, Social Security Disability Determination felt they needed Ashley to be deemed deaf and blind by independent doctors of their choosing. Honestly, if they had just scheduled a meeting for me to bring Ashley into the Social Security office, I don't think they would have needed the doctor visits.

Yesterday's visit was with an ear/nose/throat doctor and his audiologist. I have to give the Social Security folks credit for at least picking a doctor's office close to our house, but I wasn't thrilled with this particular ENT. I had seen the ENTs father for ear surgery for myself about 25 years ago, and I wasn't happy to say the least, and ended up having to have a second surgery 6 months later with another doctor. But, this was just for Ashley to prove she is deaf, so I thought it wouldn't be a big deal.

It was obvious that this particular doctor and his office staff don't usually deal with people with significant disabilities. Nothing in the office was arranged to make wheelchair accessibility a priority. In addition, no one signed. I just don't understand why a doctor and his staff work with people with hearing impairments and don't know how to sign...

The first part of the visit was testing in the audiology booth. I never know exactly how Ashley will respond to that - sometimes it has been ok and other times it has been a disaster. Yesterday wasn't too bad. Ashley cooperated and the audiologist got a pretty good reading. Unfortunately, it showed that even the little bit of hearing Ashley has in one ear has gotten worse.

The second part of the visit was seeing the doctor. I did my best to tuck away my thoughts from the bad dealings with his father, and hoped for the best. He was ok - not the least bit disability aware or friendly - but at least he was willing to admit that. He looked at her ears, and then looked at the audiology report, and finally said attempting hearing aides would probably not be worth the effort. Of course, I already knew that, but I smiled and thanked him. I wanted to make sure I played nicely so he would give an appropriate report to Social Security, and I think he will.

So, one down and one to go. Hopefully after that we will get a disability determination. So far, it's only taken 4 months :)

On The Road

This is the first time I have actually seen hand controls in a car, and how simple (seemingly) they are to use. Hopefully this video will inspire Ronnie to study for his written driver's test :)

How Technology is Changing Blindness

Check out these six TED talks about how technology is changing blindness:


First, a quick historical perspective from Ron McCallum and how he discovered the joy of reading:



Then Denis Hong tells us about making a car for the blind:



Sumit Dagar discusses Smartphones for the visually impaired and how the normal glass fronted phone just doesn't work for someone who must depend on their sense of touch:



Bob Lee shares how he teaches photography to the blind:



Neuroscientist Sheila Nirenberg is working on a prosthetic eye technology not just to improve the everyday lives of those without sight — but to give them the ability to see, in the case that they should they want it:



And finally, in this incredible video — an ad rather than a TED Talk — a young man walks to school, a young woman strolls outdoors, and an old man navigates stairs. All three are blind. Rather than a cane or seeing eye dog, they are being guided by haptic feedback shoes. These shoes, called “La Chal” and created by TED Fellow Anthony Vipin Das, use GPS technology and vibrations to let their wearers know when to turn, lift their feet and stop to avoid a hazard.

Community?

I still can't get the discussion with Ashley's doctor out of my mind. You know, the one about my plans for Ashley's future. And I wonder what you think about ideas like this:

Virginia Beach complex for people with intellectual disabilities

The proposed Virginia Beach complex appears to be modeled after a place called Lamb's Farm. Lamb's Farm has a very slick website, and from all accounts is a wonderful place.

If your loved one with disabilities is for whatever reason unable to remain in their family home, would places like these two be an acceptable alternative? They are not the dark, horrible institutions of the past (a few of which still remain at least in my state), but are they as close to inclusion in full society that we can get? Are they still an institution of sorts?

What are your thoughts?

Special Exposure Wednesday

Thank you Chuy's Restaurant for having a great kid's menu and for understanding that unlimited ranch dressing makes everything right with the world...

Always Home

I wondered which of Ashley's team of professionals would ask the question first - who would be the first to broach the difficult subject of future plans for Ashley.  It's been a subject that has been tucked away in the recesses of my mind, but one which I have been reluctant to lay out for my view and the view of others.  Since Ashley is now 18 years old, and since I am getting older hour by hour, I need to deal with the issue, but God knows, I don't want to.

Yesterday at the neurologist's office, the doctor for whom I have an immense amount of respect but one who has no filter on his mouth, asked where Ashley was going to live when I was no longer around.  He pointed out that the choices were few and most were not very good, and that we all needed to work to improve those choices.  He shared his philosophy that a society should only be measured by how it cares for those who are the weakest and most vulnerable, and he pointed out that he believes our society sucks on that.

None of this is new information for me.  None of what he said is a surprise, and even though my thoughts on the matter were tucked away, I was still very much aware of them every single hour of every single day.  And the doctor was exactly right - the choices are few and most are not good.

Even though our society has made advances on moving people from institutions to community living, the process of ensuring the community living choices are good and safe is still in its infancy.  My oldest daughter has been in a community group home for many years, but I still am not happy with the arrangements.  Problem is, it's the best choice out there for her.

And the issues for Ashley are of a much grander scale.  Having a low incidence disability means finding the appropriate support will be extremely difficult.  What I really want for Ashley is for her to remain in our family home, a place she knows and feel safe in, a place with memories of fun,good times and love.  Not a sterile environment with people she doesn't know and staff that constantly changes.

The doctor yesterday said he feels we need to look at care for our  disabled children in a similar fashion as our non-disabled children.  Our non-disabled children often go to college and move out of the family home soon afterwards.  He believes the timing should be the same for children like Ashley.  He said we should be looking for living arrangements as soon as our children turn 18.  But as much as I respect him, I think I disagree on this.  I am seeing more and more families sharing homes multigenerationally.  Three and sometimes four generations live under the same roof, and homes are being built or modified to support such  living arrangements.

So I'm not giving up on my hope that Ashley will spend her life in our family home.  I'm going to pray that the appropriate supports will be available, and that when she is 75 years old, she will look around her and be happy that she is home.

"Just Ask", They Say

I saw a Facebook post last week from a mom who has a teenage daughter with both Autism and Down Syndrome.  Like most of us parents of children with special needs, she was exhausted, depressed, and worn down.  She mentioned that she never got a break - never got to do anything by herself, never got even a moment to focus on herself.

This mom is wonderful.  She has devoted her life to her daughter, and has helped her daughter make progress academically when the school system gave up on her.  But she is a single parent, and she lives out in the country.  She has no job other than the difficult one of being a mother to her very special daughter.  And she really needs a break.  But when she posted that statement on Facebook, I was a little surprised by some of the responses.

Several well-meaning people said, "Just ask us if you need help.  We're more than willing to help."  But the mom couldn't do that and I understand completely.

When you have a child with very special needs - be they behavioral, emotional or medical - it's impossible to call in someone for help that although very well-meaning has no clue what it means to take care of your child.  And in the case of a child with significant medical needs, any 'helper' would need to be well-trained and well-versed in the particular medical situations your child faces.  And if we have to do the training, that's yet another burden to add to our already overflowing responsibilities.

So what do we parents of children with multiple and complex needs do?  If we are lucky, we can get some support through Medicaid waivers.  But even with waiver services, finding people who know sign-language, who understand positive behavioral supports, or are trach trained, for example, is extremely difficult.  What we do most often is rely on other parents in situations similar to our own.  We trade services, so to speak.  If you watch my child for a couple of hours, I'll watch yours.  But we're not really solving our problems.  The whole time we are away and relying on another parent that we know is just as worn out as we are, we feel guilty.  We rush our errands so we don't leave the other parent too long.  And we know that all we are doing is increasing each other's workloads and overall exhaustion.

I don't have a solution to this problem, but I did want the other mom to  know I do understand.  If any of you have any suggestions, please share them.

Transition Woes

There have been a few bumps in the road for Ashley's transition back to school this year, but I don't think it is the fault of anything or anyone at the school.

Though Ashley was so excited the first morning of school, she came home that afternoon in a not-so-great mood. She seemed a little tired and was a bit cranky - not at all like her usual self. The second morning brought a little less excitement and falling asleep as she waited for the bus to arrive. And the second afternoon was worse than the first. She was very cranky - nothing seemed to make her happy - she dug in her heels when it came to her normal dinner, bathtime and bedtime routines - and I could tell she was so exhausted that she was slightly unsteady on her feet. Then this morning, the third day of school, all excitement had waned and all she wanted to do was sleep.

I believe the problem is that she was very lazy over the summer. Of the three aides that split the summer hours, only one ever took Ashley out of the house. The other two were more than happy to let her lounge around on the couch all day long. And one of the things Ashley is very, very good at is lounging on the couch.

I think she is exhausted and having a tough time at school because she is actually having to be active - changing classes five times a day, going to PE every day, walking around a campus with sloping sidewalks and stairways. She has also been very hungry, but I think the hunger is her body trying to compensate for being so tired and wanting more energy.

Ashley's teachers and I have come up with a plan to ease her back into the school routine. Things like a morning and afternoon snack and using her wheelchair sparingly during the day when she seems especially tired. But you can bet that next summer, we will have a new plan and it will not involve being a slug on the couch all day!

Tommy Edison

Have you ever wondered about the perks of being blind? Or, how to describe colors to a blind person, or explain concepts like the setting sun? Or, how blind people use paper money or an ATM? Or, what happens when a blind person gets drunk, or tries to learn to shoot a basketball? For answers to these questions and dozens more, all while smiling and laughing, check out the experiences of Blind Film Critic, Tommy Edison.

 

Special Exposure WEDNESDAY

Hey, what day is it? I say, what day is it? Yuuup, it's hump day!

Last Fling

We decided to have one last fling before the start of school.  Last Friday, we drove two hours across Virginia to check out the Virginia Safari Park, and boy were we glad.  It was an incredible place!  You drive through the park in your car, and lots and lots of animals come up to your car to get fed.  Some are not shy and will stick their whole head in the window!  There is also a walk around park that was every bit as fun as the drive-thru route.  And the best thing of all???  The owners had done an outstanding job of making every inch of both parks wheelchair accessible!  Kudos for that!!