Archive for Howard

If I Cannot Get There It Is Not Real

I recently took my son to a meeting of the Transportation Workgroup for the Florida Developmental Disability Council.  Thomas (TJ) sits on that workgroup.  Before the meeting started in my talks with one of the other workgroup members they made the comment “If I cannot get there it is not real.”  She was relating a statement that one of the FDDC members had made some time ago.

That simple statement hit home with me.  It was insightful, on target and right on point.  If I cannot get there it is not real.

Over 6 million person with disabilities have problems finding adequate transportation.  Statistics also show that as many as 1.9 million persons with disabilities almost never leave their homes because of transportation issues.

Transportation is a major issue and a major problem for those with disabilities.

For example, a job opens up that would be a good fit for a person with a disability.  This is a real job paying a real wage.  However, if the person qualified for the job has no way to get there then –  If I cannot get there it is not real.

New services are being offered or a new program opens up in a town or city that would benefit those with disabilities.  This program will enhance and enrich their lives. – If I cannot get there it is not real.

A movie has just been released that this person really wants to see.  However, there is no transportation available – no accessible transportation that they can use to go see the movie.  If I cannot get there it is not real.

Those who do not have transportation issues cannot understand what is like to live without adequate available transportation.  Those who do not have transportation issues see the world in a completely different way.

However, for those who have little or no transportation options – the world is not real.  If I cannot get there it is not real.

Solutions are available.  However, they involve investing in public transportation.  In areas where the population cannot support that option – then an investment in allowing those with disabilities to have access to private transportation options needs to be established.

Realize that 1.9 million people do not leave their homes because they lack transportation options – Unacceptable.  1.9 million people are denied access to a real life and the real world because of funding for transportation – Unacceptable.

The world is real.  Opportunities to enjoy life are real.  Jobs are real.  Restaurants and movie theatres are rea.

However – If I cannot get there it is not real.  So keep squeaking those wheels.

Another Year In Tallahassee

I recently made one of my yearly trips to our Capital in Tallahassee.  Some years I have make more than one trip, but most of the time it is just one trip to advocate for legislation helping those with disabilities.

Chatting with Senator Dean (he will soon be terming our and he will be missed) I was reminded that I have been meeting with him since his first year in office – that was 2002.  Time flies, so my trips have been going on for over 12 years.  I am not sure if I was visiting before he took office.  Encounters blur together and memories are not always perfect.

Never the less, it has been a lot of years advocating.  Over the years my advocacy has been varied, not just limited to those issues that affect the disabled.  In fact my first couple of years centered on children’s issues and my trips were made during Children’s Week at the Capital.

Although these last years I have been going up during Developmental Disability Day at the Capital I still advocate for more than just those with disabilities.  I continue to advocate for our children, especially those in foster care or recently adopted.  This year there were some justice issues that also were on my legislative agenda.  Two of them being a bill to end the death penalty in Florida (it may not pass this year but it is inevitable) and a bill to required a unanimous jury verdict to impost the death penalty (this looks like it could pass this year.)

Restoring budget cuts for those with disabilities is a big issue this year and will continue to be for the future.  Reimbursement rates for those who provide services to those with disabilities have been cut over 14% on the average.  And these cuts have been in place for over a decade.   This year advocacy groups are hoping to get 7% restored.  This will still not bring us back to 2003 levels.

Employment and transportation are also important issues.  There is an Employment First Bill that could give employers incentives to hire persons with disabilities.  Transportation funding always falls short of what is needed.

There are still over 20,000 Florida citizens with disabilities on a waiting list for services.  The legislature and governor are being asked to provide funding to remove as many as possible from this waiting list and to provide these essential services for our vulnerable citizens.

Children with disabilities are still being housed in nursing homes or facilities for adults.  Children with some medical needs, usually complex, are being housed in nursing home facilities for the elderly despite a lawsuit and direction from the Federal Government to place them in appropriate facilities.

There are many other issues that impact the daily life and quality of life of our citizens with disabilities.  These needs should be addressed and solutions put in place.

I am a realist when it comes to Tallahassee.  I look for, hope for and work for incremental changes.  This has worked in the past, as we have moved forward to better serve this population.  I am heartened by the fact that we have not taken any steps backward in the last few years.  This is an area where two steps forward and one step backward is unacceptable.

 

 

Fake Service Animals

If you watch the news you may have noticed the stories about fake service animals.  Based on the analysis of the news reports we have an epidemic of fakers taking their pets with them.

Yes there are a number of websites that will sell anyone a service dog vest.  Yes there are a number of websites that will issue certifications that your dog is a service dot.  And yes there are fakers out there.

Many fakers are easy to spot.  Their dogs are out of control.  They bark and lunge at people.  They pull products off of the shelves in a store.  They are constantly putting their noses and faces up on tables in restaurants.  They may even go to the bathroom in a public store or restaurant.

Businesses already have remedies for fake service dogs that will not behave in public.  The American with Disabilities Act (ADA) allows business owners to ask the service dog handler to remove the dog if:

  1. The dog is out of control and the handler does not take effective action to control it.
  2. The dog is not housebroken.

When there is a legitimate reason to ask that a service animal be removed, staff must offer the person with the disability the opportunity to obtain goods or services without the animal’s presence.

So a remedy already exists for fakers whose supposed service dog is not trained or misbehaves.

Businesses can also ask service dog owners two questions:

  1. Is it a service dog?
  2. What service or task does the dog perform for the handler or owner?

However, it is difficult to determine if an animal is fake based on those two questions alone.  The business owner can not ask anything else.

It is a crime to portray a pet as a service animal both at the federal and at the state level in most states.  It is often difficult to prove that an animal is fake or not a true service animal.

From a business perspective fake service dogs or any service dog that misbehaves or is out of control can be removed from their business.  The law already allows that.

The notion that we should change the ADA law or punish valid users of service dogs because of fakers is something that would be very wrong.  The ADA was purposely written to allow those who need service dogs the ability to use them without a lot of red tape or hassles.

There are groups that want to require certification.  However, no two agencies that train or currently claim to certify service dogs use the same criteria.  Additionally, there are many owner trained service dogs working that do a great job.

Adding certification would add another layer of bureaucracy and also put a financial burden on the disabled, most of who live at or below the poverty line.

Persons with disabilities already have a difficult time.  They have to deal with SSI or SSDI or both, Medicare or Medicaid, low cost housing, and more.  They do not need the extra burden of locating and transporting their service dog to an approved certification agency and paying a fee for certification.  Especially since many with disabilities do not have transportation.

Yes there are fake service dogs.  The handlers should be punished when identified.  But to put more paperwork, cost and burden on a person with a disability because of the fakers, just does not make sense.

At least that is what I feel as I squeak my wheels.

 

Myths About Persons with Disabilities

NOTE:  Previous published as an Op-Ed piece in the Ocala Star Banner.  Original can be seen here.

October is National Disability Awareness Month. The focus has traditionally been on raising awareness about persons with disabilities, focusing on the needs for employment for persons with disabilities and improving awareness of the need for full accessibility for persons with disabilities.

Nearly 20 percent of people in the U.S. have a disability. That is one in five, making those with disabilities the largest minority population in the U.S. It also is one of the few minority groups you can join at any time.

Here are some myths about people with disabilities that need to be busted and understood:

■ People with disabilities tend to be sickly. Wrong. Most people with disabilities are healthy. Although some disabilities are the result of illness, the disability itself is not an illness. Oftentimes, the disability is not a medical condition at all. Many researchers and advocates now say that the medical model should no longer be used when dealing with those who have a disability. Rather than finding a cure, acceptance is the better way to deal with them.

■ People with disabilities should be, or want to be, admired. I know a woman who has said, “Do not admire me. The desire to live a full life does not warrant adoration. Respect me, for respect presumes equity.”

■ People with disabilities live completely different lives than the nondisabled. While, in some cases, their lives may be different, the reality is that people with disabilities want the same things everyone else wants. They want to be included, to have a job, a spouse or significant other, family and friends. They want to live an independent life.

■ You should help someone with a disability when out in the public. We all need assistance from time to time. However, do not assume someone with a disability needs or wants your help. People with disabilities value their independence like anyone else.

■ People with disabilities are more comfortable with “their own kind.” That is completely false. Like anyone else, people with disabilities are people and have or should have friends who are similar to themselves as well as friends who are different.

■ People with disabilities need friends. While loneliness and isolation often are the result of living with a disability, they do not want random friends. As one person with a disability told me, “People should not walk up to me and assume they are my friend. Get to know me. We may become friends.”

■ All people with hearing disabilities can read lips. Some can read lips, and many do not. Do not assume they can read your lips.

■ People who are blind develop a sixth sense. Often people who are blind or sight-impaired develop their other senses more than you or I, but they do not have an uncanny or special sixth sense.

■ Wheelchairs confine or limit the activities of a person with a disability. Most people who use a wheelchair do not consider themselves wheelchair bound. It is just a way for the person to easily get around.

■ The only real service animals are seeing eye or guide dogs. The Americans with Disabilities Act (ADA) defines a service animal as any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.

■ Service animals need to wear a vest or other identification. The ADA does not require a special vest or identification. Some service animals may be equipped with a harness because of the service they provide their owner.

The important thing to remember is that people with disabilities are people first. They are not their disability, and even though their disability may impact their life, their disability does not define them. Like everyone, they have likes and dislikes. They have faults and strengths. They have dreams and aspirations. They have successes and failures.

Be aware during Disability Awareness Month of those who have disabilities around you. Keep that awareness alive all year by remembering that those with disabilities simply want to live an independent life like anyone else.

Attitude, Attitude, Attitude

The saying in real estate is that it is all about location, location, location.  Something similar applies to life.  It is all about attitude, attitude, attitude.

Having your health is nice.  Having friends and family is nice.  Having money is nice.  Having a good job is nice.  However, without the proper attitude, your life can still be lacking something important.

There have been numerous books written about having a good attitude and how it can change your life.  There are courses and seminars on having the right attitude.  There are those who claim having the proper attitude will promote healing.

Radio and television ads claim that getting your attitude right will make you rich.  Of course you have to pay them to find out how.

There have been scientific studies showing that attitude helps keep people healthy and that they often live longer lives.

If there is so much out there promoting having a good or proper attitude, then why do so many people still not get it?

There can be no excuses.  Being sick is no excuse.  Being poor is no excuse.  Being lonely is no excuse.  Attitude (except in some rare cases involving mental illness) is completely under our control.  Yes, we control our attitude.

There is no need to take a class, go to a seminar, watch someone on television or read a book on how to develop the proper attitude.  Each of us knows instinctively what a good or bad attitude is.  We just seem to choose to ignore it.

For those who are feeling sorry for themselves.  For those who want to give up.  For those who want to focus on their problems.  I say – start squeaking your wheels and change your attitude.

Note:  I do recognize that depression, anxiety and other similar problems do exist as an illness or condition.  In these circumstances and in the case of some mental or physical illnesses the individual has no control over their feelings or attitudes.  I do not include these individuals when telling them to get off their butts and change.  For those individuals I would suggest getting the help that is available and when possible make those life changes that they are capable of making.

 

Slow Brain Day

I call them slow brain days.  You may have them.  Getting up is a little harder than normal.  Starting the day seems like work.  Everything you do just seems to take more time and effort.  Sometimes more time and effort than seems worthwhile.

If my teenagers had tried that years ago I would have told them they were being lazy or they were trying to get over on something.  And they probably would have been.

Now years later, having survived a stroke and having part of my brain die – it is something has happens now and then.  My brain just needs a break so it takes one.

I have learned to listen to my body.  If I am tired at 7 or 8 pm I go to sleep.  If my leg is doing the twitchy thing (that is my legs way of telling me enough) then I sit and let it rest.  So it would follow that if my brain wants to go slowly, then I should take it easy and let my brain have its way.

One of the advantages of being retired and disabled is that I have the luxury of allowing my body to dictate my schedule.  Why push my brain when it needs rest?  I have no pressing engagements.

There have been days that are not slow brain days.  However on occasion my brain will get overworked.  It is not exactly a headache and my brain does not really hurt, but it lets me know it wants a time out.

Anyone who has suffered a brain injury will probably know what I mean.  Those times when your brain just does not want to think, or rather not think to hard.

It is not something that we can control.  We may have coping mechanisms.  We may have ways to disguise those times.  However, the bottom line is that the brain usually wins and we have to give it a rest.  Literally.

This is just one of the many invisible disabilities that accompany brain injuries, both TBI and ABI.  Brain injury survivors have two choices, fight it or accept it.  I have found that fighting what my body and brain are telling me is futile.

I do stretch my limits.  I do challenge both my body and my brain.  However, when push comes to shove, I am overruled.

It is not the end of the world.  Slow brain day, then I just take it easy.  After all I have an excuse for lolling about, part of my brain died.

Previously posted on my blog Part of My Brain Died What is Your Excuse.

Science Fiction, Fantasy, Comics, Gaming and Those with Disabilities

Dragon Con in Atlanta bills itself as the largest multi-media popular culture convention focusing on science fiction and fantasy, gaming, comics, literature, art, music and film in the universe.

It is held in a number of hotels in downtown Atlanta and the crowds can be massive.  Over 50,000 people attended this year, possibly 60,000.  They can be intimidating for people who have no special needs or disabilities, but for those with disabilities it can be a massive task to overcome.

Two things make Dragon Con easier for those with disabilities to handle.  First, the people who attend the Con are mostly geeks.  Yes we are geeks and proud of it.  Many of them have been picked on or made to feel different.  As a result, the Con crowd accepts everyone and judges no one.  No matter what, you are made to feel welcome.

Second, the Dragon Con disability services are great.  The staff and volunteers do their best to accommodate everyone.  It does not matter what your special need or disability is, there is an attempt to meet your needs.  As with any event this size, there will be problems.  As with any event this size, there are never enough sign language interpreters to go around.  As with any event this size, wheelchairs and walkers often get lost in the crowds and have difficulty getting through.  Elevators can also be challenging because of the number of people.

Despite the crowds and the size of the event, everyone I talked to had a great time and had little or no difficulties with getting the accessibility they needed.

I attended with my service dog Maggie and a friend also joined me with her service dog.  We were given seats up front in most cases to protect the dogs from being stepped on or tripped over.  It also allowed us to enter before the mass of bodies pushed through the doors.

Most of the attendees were respectful to the dogs and although many asked if they could pet them, only a few reached out without permission.

Overall the Con was a favorable experience – we had fun and Maggie handled the very large crowds very well.  I am not sure if a crowd of 50,000 to 60,000 non-geeks would have been as much fun or as easy to handle.

My experience has been that geeks (and I am one, albeit and older geek) tend to be accepting and easy to get along with.

Meanwhile, keep squeaking those wheels and have fun.

Florida Service Animal Legislation

Thomas (TJ) and I recently visited the Capital for Disability Day.  We visited a number of our legislators.  We both believe that you need to be engaged if you are to make a difference.  Of course we never know whether we have made a difference or not.

However, if you do not try, you will never be an instrument of change. Being that instrument of change is what we are called to be.

This year I worked on HB 849/SB 1146 that deals with Service Animals here in Florida.  Service animals are covered and our rights protected by the American With Disabilities Act at a Federal level.

Florida’s law covering service animals has some gaps and loop holes.  The intent of the new legislation is to fill these gaps and bring Florida in compliance with the ADA.

Florida law only recognizes service animals for the blind, deaf and physically impaired.  There is no coverage under the state law for mental health animals, PTSD service animals or medical alert animals.

Additionally, the ADA defines service animals as dogs and miniature horses.  Florida does not specify which animals qualify as “service animals”.  This means that someone could claim a service cat, monkey or other animal.  This legislation would define service animal in Florida as the same as the federal standards.

The legislation would make it a misdemeanor in Florida to interfere with or deny access to anyone with a service animal.  Currently service animal owners have to sue at the federal level.  If it is in Florida statute a local law enforcement officer could issue a citation if a person with a service animal is denied access.

The bill also addresses penalties for fake service animals and the rights to animals under the Fair Housing Act.

Overall the legislation create very little that is new.  It simply brings Florida in compliance with the Federal ADA legislation.

All of the legislators I spoke with were favorable to the legislation.  Unfortunately there are often more bills to vote on than there is time for.  Many pieces of good legislation die because there is not enough time to get them through all of the committees.

For most of the citizens of Florida this legislation will have little or no impact on their daily lives.  For those of us who use service animals, this legislation is important.  A true service dog is considered a piece of medical equipment and is not a luxury but in almost all cases a necessity for the owner of the animal.

Hopefully this year the bills dealing with service animals will make a timely passage through the various committees and make it to the floors of the House and Senate.

 

Tallahassee – Disability Day

Thomas and I will be attending the annual Disability Day at the Capital on Monday and Tuesday of this week.  DD Day will be on Tuesday; however we will be up a day early so that we can meet with as many legislators as possible while we are in town.

As advocates and a self-advocates it is important to stay connected with our state legislators.  It is also important to be active on the national level.  However, I have found that as advocates we can be more effective at the state level.  The laws and budgets passed by the State of Florida directly and significantly impact the lives of persons living with disabilities here in our state.

I have been advocating in Tallahassee since Jeb Bush was governor.  I like to think that my efforts have had some level of success and have helped to make the lives of many Florida citizens better.

The issues have remained the same for as long as I have been doing this.  We need better employment opportunities and better transportation services.  These two often go hand in hand.  It is hard to find employment if you can not get to and from work.  Persons with disabilities have a high rate of unemployment.  Only 18% of people with disabilities are employed.

Every year we fight to keep the Early Steps program funded.  This is administered by Children’s Medical Services and is the Part C of the IDEA – Individuals with Disabilities Education Act.  They provide early intervention services for 0 to 3 and serve over 40,000 children in Florida.  History has shown that early intervention works.

The Med Waiver has been under funded for a decade or more.  We currently have over 20,000 people on the Med Waiver waiting list.  Every year we work to increase funding in an attempt to reduce the waiting list and continue to provide community services for those who so desperately need them.

Last session we saw and increase in funding and were able to remove over 1,000 individuals from the waiting list.  However, we still have a long way to go.

Every year the treatment of children with disabilities in our public schools is discussed.  In 2010 we had the first significant legislation protecting children from the abuse of seclusion and restraint in our public schools.  This year there is no legislation proposed so our children will remain vulnerable to abuse for another year.

Each year we fight the same battles.  Some years we make small steps and we celebrate our successes.  It is sad that advocates for the most vulnerable members of our society have to settle for small incremental successes.  However, that is the reality that over 20% of our citizens live with. That is the percent of people who have a disability.

This Tuesday, March 18 you should hear the squeaking of wheels in Tallahassee.  I hope that our legislators listen and appreciate how difficult it is for so many of our disabled citizens to make the trip to the Capital.  We want to be listened to, we want to be heard and we want to be taken seriously.

We will continue to keep squeaking our wheels for as long as it takes.