Advocacy Opportunity Update: Kansas Legislature

This is an area where we cannot skimp for persons with disabilities. It’s already next to impossible to find educated employees due to the lowest pay rates for State paid workers. Agencies with good workers are already too expensive for us to pay.

The Kansas City Disability Advocacy Network

Image from KMBC. Image from KMBC.

As of the typing of this post, the Kansas legislature has rejected a bill that would increase taxes by over $400 million to fill a budget shortfall.  This means that there could be potential cuts to the state budget if a bill is not passed because the constitution for the state of Kansas requires a balanced budget.  According to the Kansas Public Radio website:

The tax increases would have balanced a $15.4 billion budget already approved by the Republican-dominated Legislature.  The state’s budget problems arose after legislators slashed income taxes in 2012 and 2013 at GOP Governor Sam Brownback’s urging.  The Kansas Constitution prohibits the state from running a deficit. Brownback’s budget director warned lawmakers this week failing to pass a tax bill would lead to across-the-board spending cuts.  House GOP leaders held the roll open for four hours over two days but couldn’t get the…

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High Maintenance Travel

Have you ever been running through an airport at the last minute when airport security stops to go through all your bags?  Or, have you traveled with toddlers?  That’s a little bit what it’s like to go somewhere unknown as a person with a disabling condition.

When I couldn’t get enough oxygen to my brain inside the cabin of a plane, I passed out on the plane’s departure.  I’ve ascended stairways because the elevators didn’t work once I arrived at a hotel, only to find myself stuck in my room the next day.  I awoke unable to use my legs due to hauling my luggage up five flights of stairs.

Did I mention I’m required to carry doctors’ notes for my medicines and my assistance dog?  Did I also mention the notes must be dated from the current year?  Yes, folks I am required to travel with notes from my doctors.  Yes, I have all my belongings searched at security.          2013-06-17 20.16.12

I have to locate the designated potty grass at each airport prior to flying, and my stroke alert dog counts as a carry-on with some airlines.  After a couple hours in the air, could you keep your dog from relieving itself on whatever greenery it could find?

‘You just have to plan for the unexpected.’  That’s society’s simple solution for all the extra problems that I encounter in order to travel.  However, it is absolutely the wrong thing to say to someone who can barely walk when they step out of the car, subway, or airplane. Airport security now limits those preparations, which makes travel even more daunting and expensive.

No matter what mode of transportation I use, planning is super key for me.  Spontaneity is what happens when the plan is disrupted.  It isn’t something I can afford to do.  I plan for my plan not to go according to plan.  For example, I map out driving stops to walk and stretch to keep the nerves in my hands and legs viable.  In the air, I book a flight in advance to choose my seat so I can pace in the aisle should leg tremors or clots become an issue.

                                                                                                                       SONY DSC

Top Seven Travel Recommendations

  1. I highly recommend checking airline options for assistance prior to booking a ticket.  Some companies offer an attendant with a wheelchair to help maneuver inside the airport, but this service does need to be arranged prior to travel.  When I arrive in new airport hubs, I order the service in the event my equilibrium does not return upon landing.  I love making a big splash in a new town as much as the next girl, but no one wants my splash to be passing out on the luggage carousel.
  2. Before making a hotel reservation, I call the staff at the hotel. The on-line advertising can be deceptive.  The term ‘handicap accessible’ translates loosely.  I ask the staff about the bathroom set up, stairs, elevators, parking and the requirements for a service dog.
  3. Always, always, always question airlines, hotels, bus lines, and tram services regarding the little extra costs i.e. baggage charges, wheelchair storage or lift, assistance with baggage, etc.
  4. The week prior to departure, pack and re-pack for longer journeys. I have a better chance of remembering the most necessary items over several days. 
  5. Please gather as much information regarding the destination as possible. Ask the hotel the distance of the closest pharmacy or hospital.  Is the subway wheelchair accessible?  If I travel internationally, I ask what most locals do when they have a medical emergency.
  6. In the event of an emergency, I carry a medical tag and a list of medications with Doctor’s phone contacts.
  7. Most importantly I plan for my body to cry out its distress in unusual ways. Try as I might, I am not in control of the stress, travel inflicts on me.  However, I was ‘born under a wandering star’.  If it seems like more work than it’s worth, I think to myself, ‘What a Wonderful World’.  There’s no sense being trapped in one location on earth and missing the most important people of my life.         2013-11-30 13.55.12

Why Traumatic Brain Injuries (TBI’s) are serious?

Why Traumatic Brain Injuries (TBI’s) are serious?.

Why Traumatic Brain Injuries (TBI’s) are serious?

I can no longer remain quiet regarding what I know about Traumatic Brain Injuries (TBI).  I assumed people understood the damage multiple TBI’s could cause.  I heard boxers, football players, and hockey players struggle to speak in short simple sentences on T.V.  Wasn’t that proof repeated blows to the head would destroy a person’s brain?

The brain continues to be one of the greatest unknowns in medicine.  Every learning differentiation, many diseases, physical disabilities, and behavioral abnormalities are rooted inside the cranium.

When I stop to consider how the bones of the head grow together after birth, it becomes easier to comprehend the damage even one blow to the head inflicts. Much like the earth’s tectonic plates, the bones of the head grow together unevenly.  Inside the cranium,

Read my story #97 to see how TBI affected my life.

Read my story #97 to see how TBI affected my life.

mountains of sharp bone can protrude against the brain.  If a brain is damaged by one blow to the head, then he may have sharp bone fissures tearing at his brain tissue.  It is also the reason reputable child-care professionals take head injuries more seriously these days.  For a child with sharper bone growth, one blow is enough to disable or end their life.

This helps explain why several people can be in the same vehicle at the time of an automobile accident and have varied degrees of brain damage.  Despite what our parents taught us, all bumps to the head do some damage.  The area of the brain that absorbed the brunt of the trauma determines which ability is impacted.

Will there be a time when children’s brains are scanned to determine their risk level for a TBI?  Will professional sports start taking TBI’s more seriously?  Will society continue to glorify and push children into competitive sports where head trauma is sustained?

The Ever-evolving Work Program

In my last blog, I described how a person could purchase Medicaid to receive the benefits of ‘The Working Healthy Program’. I wondered why anyone would work so hard only to give all their pay to the State of Kansas. ‘The Work Program’ is the answer. It is an unpublicized program under ‘The Working Healthy Program’. Only a handful of Kansas Medicaid workers know about the power and freedom this program provides.

Now that's the way to fish.

Now that’s the way to fish.

Designed for persons drawing SSDI who don’t receive Medicaid, ‘The Work Program’ only affects a small percentage of Kansans. It picks up the costs of many Medicare co-pays on prescriptions and doctor’s visits. Medicaid also provides special monies for home health assistance which allows a person to work. The State will pony-up the Medicare premiums, too. The Kansan, who’s disabled and uses vocational rehab to learn new skills for employment, can build a 401K, savings account, etc. without the loss of Medicaid services immediately.

The biggest struggle for someone with a degenerative disease is to stay healthy and work simultaneously. If their health deteriorates, then all the assistance disappears because they can no longer pay for Medicaid. Then again, a person needs to check these facts periodically because the rules of the game change.

Sharing my Cross

In today’s economy, a person diagnosed with a chronic illness, is the first person cut from the workforce. Most Americans believe Social Security Disability Insurance (SSDI) and Medicaid provide for the exorbitant medical needs of an adult in this situation. They also think adults on disability receive Medicare, Medicaid, and welfare for free. This could not be further from the truth.
For example, if a monthly SSDI check is above $475 (It will be if the person worked.), then she will not receive medical assistance or Foodstamps from Medicaid. At the inception of Medicaid, it was determined a person with a permanent disability could pay rent, food, and utilities with $500. Can any of you live on that amount of money?

Kansans with Disabilities need help.

Kansans with Disabilities need help.

It is also more expensive to stay alive and independent as an adult with a disability. First, she pays between $125-175 for Medicare monthly. Home health assistance, special transportation, alternative/ adapted housing, etc. is all necessary and out-of-pocket expense. This is where the rest of the SSDI income is supposed to be paid beyond the aforementioned $475. If a person is unable to pay for the necessities with that $475, it does not matter. FYI- The cost of living increase President Obama gives, is only enough to cover the increase in Medicare that corresponds with the cost of living increase.
For a person, who still has a few marketable skills, the Working Healthy Program can be a resource for medical assistance. It is the only way a person on SSDI can receive medical assistance without incurring thousands of dollars of medical debt. In order to be eligible, they need to work no more than 10 hours a week and earn at least $65 a month and pay taxes on the $65. Then their SSDI income is added to their monthly earnings, and they have to pay a monthly premium, usually more than their monthly earnings, to receive Medicaid assistance.
Watch how quickly the money disappears. A person who draws $1600 in SSDI and earns $70/ month will need to pay $83/ month for Medicaid assistance plus business taxes. Take out the Medicare premiums $1375, government subsidized housing $1050, food $800, insurance $740, vehicle $600, utilities $350, assistance dog $275, co-pays and over the counter medicines $175, business expenses $75, etc.
Why work when all the earnings go to Medicaid? Why doesn’t the government offer a monthly premium option for all people on SSDI who need Medicaid due to expensive treatments? Under the current rules, someone with a disability cannot afford to work or taper off disability in many cases.
If you have further questions about the Kansas Medicaid system, you can visit the state’s website at http://www.kdheks.gov/hcf/workinghealthy.index.htm. I want to encourage all Kansans to stand up for adults with disabling conditions who want to continue working and improve the quality of their lives.

God’s Workmanship

The steam from the shower made my head pound. At least, I finished shampooing my short crop before a wave of nausea hit me. My arms and legs turned to the consistency of noodles as I found the edge of my bathtub. I started shaking and slid to the cold tile floor.
Lord, what’s happening?
My chest burned. The blood vessels in my brain felt like volcano lava. Can I push myself up to the toilet bowl before I vomit?
I prayed, “God, I’m lying here naked before you. Am I having a heart attack? What should I do? Please help me.”
As the bile rose in my throat, I was lifted to the toilet. The vomit landed inside the bowl. Praise the Lord!
The Lord chose not to take my life that day. I clung to the floor for another hour until help arrived. My prayers centered on the survival of my soul with an unpredictable disease like Multiple Sclerosis. I recalled a recent Bible study passage.
Ephesians 2:8-10 (NIV) “…for we are God’s workmanship, created in Christ Jesus

to do good works, which God prepared in advance for us to do.”

My faith that God prepared work for me, knowing my medical future, drives my spirit. Writing, providing advice, and encouraging people gives me a reason to painfully rise from my bed each morning. This thankless task brings me hope.
Hope on earth is priceless to anyone uniquely-abled. Otherwise, I sit around longing for heaven or selfish works that do not have a place in God’s future for me.
My strength comes from the Lord. He guides me toward caregivers or people who are struggling with limitations. I believe I can help bridge the gaps in communication that invariably occur in families when someone has been diagnosed with a chronic disability or disease.
Can you relate with my point of view? Or, do you read my blog to understand a loved-one’s perspective?

A great moment with my niece.

A great moment with my niece.

My Kingdom for a Handicap Accessible Throne

Growing up without a physical challenge, I rarely thought about the differences in toilets. Even spending an inordinate amount of time at the plumbing storehouse with my dad, didn’t prepare me for what I’ve now painfully learned. Just because there’s a bigger door around a toilet, does not mean it is handicap accessible.
An accessible toilet bowl is elongated and a few inches taller than a general toilet. This makes transfers from wheelchairs easier. It is much easier on arthritic hip joints.
Being independent, I’m expected to carry around everything I may need. This explains my various carts on wheels. Now, am I expected to carry a toilet seat extender everywhere I go? Would you want to stand next to a person carrying a toilet seat?
In a nation where everything is supposed to be accessible, would it be too much to ask for the proper toilets? Most public facilities save money by placing shorter toilets behind those accessible toilet doors.
The next time you hear someone scream in pain or struggle to pull themselves up into a wheelchair, please ponder what I’ve shared. When a school is rebuilt or a new church building is planned, will you be the one to stand up for a few accessible toilet bowls?
Don’t even get me started on the cleanliness of the toilets…

A Handicap Accessible Toilet

A Handicap Accessible Toilet

Auditory Aids for Cognition

Yes, you notice this man or woman quickly.  If you sit next to them at the movie theater, they repeat lines they’ve heard from memory or with the characters (when they’ve viewed the movie the 2nd time).  Maybe you are in a debate with them at work, and they use your own words against you.  The stereo system they own is substantial.

Every brain works differently especially if it is subjected to an injury or disease.  This week’s blog is focused on persons who need auditory aids.

Text to speech programs and functions on computers are necessary for people with vision difficulties and or learning disabilities.  Assistive Technology for Kansans helps assess and find a way to pay for auditory aids.  I’d suggest that you check with your state to access similar services where you live.

Each state also has a book-on-tape lending library.  A recording of books, magazines, etc. may be ordered through this service.  If you attend school, you can request your textbooks be read onto tape.  The only catch is- you need to place an order several months in advance for textbooks not yet in the library.  They include a special tape cassette player or CD player for what you need at no cost to you.

Persons dependent on auditory aids respond strongly to music.  It can either assist with memory or learning or distract them from taking in new information.  Malachi piano

A digital memo-taker is a “must” for our friends dependent on hearing.   Handing a grocery list to one of these people before they go to the store for you, is a risky proposition.  Thankfully, most cell phones provide this service.

Persons dependent on auditory aids can become overwhelmed easily without a break from sounds.  They hear things that visual persons do not, or they are distracted by “white noise” around them.

Taking breaks from listening, can be helpful throughout the day in order to focus on the most important messages.  Ear buds, headphones, or ear plugs reduces irritants for both you and the audio-dependent person.DSC00076

Visual Aids to Enhance Cognition

Visual Modifications

This blog is dedicated to anyone with memory, auditory processing, language, or behavioral transition issues.  Our brains process information uniquely which requires more personal visual accommodations.

The day of cutting and pasting social stories or visual schedules together, is over.  My recommendation is to invest in an on-line service to create visual schedules, calendars, social stories, memory books, etc.

Adult Visual Schedule                    Image

We depend on visual modification.  Our visual field can become overwhelmed in our attempts to rearrange our environment with many visual reminders.

Image     Signal that visual memory is struggling.

Younger children may need to have the font, size, or color of text converted for their textbooks. That is why a service to reconfigure or update the visuals saves time. The items also need to be durable and transportable.

My favorite service is Pixingo.  Go to www.pixingo.com/1946 to see visual memory aids.

Social story & Memory Book  DSC00060                                                  DSC00061

These tools work best if they provide current pictures of children with their names and/or relationships to us.  It allows for easier recall of speech or memory.  For this size of book, one or two sentences would be the most print to use per page.  A dry erase poster serves as a memory board for chores, steps to complete a task, or post names with new pictures for  persons with Alzheimer’s or Parkinson’s disease.

Do you have any specific questions about designing visual aids? Visual fields?