ELLIE'S BLOG on Living Well with Disability

My recent blog is about socializing well with people with speech  problems during this holiday season.Over the past few years I have talked of other people affected by disabilities. I have listed them below for all to re-read or read for information.

REMEMBER THE CAREGIVERS OF THE DISABLED THIS HOLIDAY SEASON

BE SURE TO REALLY INCLUDE PEOPLE WITH PHYSICAL DISABILITIES THIS HOLIDAY SEASON

BE SURE TO REALLY INCLUDE THE HEARING AND VISUALLY IMPAIRED THIS HOLIDAY SEASON

Thanksgiving with family 

Have wonderful Holiday's with family and friends.

ellie

The Holiday Season is a time for meeting with new and old friends in your home or at outside events.  Whether it's a family, community or other special holiday event chatting and talking is what we mostly do at these events. This year you may meet someone new or someone that you might not have seen for awhile that has changed since you last met them. And as my blog is about disability of course I'm talking about someone with a specific disability.

In this blog I want to talk about people with a speech disability.  Actually to be more correct : a speech disorder or a language disorder.  A speech disorder is when a person has difficulty pronouncing sounds or articulating. Stuttering is an example of a speech disorder like in the movie "The King's Speech".

Recently there was an article and video in the news by a courageous young man who has a stuttering problem. When Philip was told by his teacher that he was not to talk in class as she felt that his speaking was disruptive he didn't do what most people with a stuttering problem would have done, kept quiet. He fought back.

For more information see the article  from the NY Times .   <http://www.nytimes.com/2011/10/11/education/11stutter.html?hp        

And when you do be sure to click on his YouTubechannel .

The other speech disorder category is  Articulating Disorders. This  can be a simple childhood difficulty in saying certain vowels or consonants. But in adults it is most likely a motor speech disorder (Apraxia) . Here the persons brain and their oral muscles required to make sounds are not in synch. This can be due to a stroke,traumatic brain injury,dementia,tumors and progressive neurological disorders like Multiple Sclerosis.

The language Disorder category can be divided into a receptive or expressive disorder.

A receptive language disorder is when a person has trouble understanding others . This is caused by a severe injury to the brain by trauma or disease.

An expressive language disorder in a person means that for them sharing thoughts, ideas and feelings in a fluent manner is difficult. This can be due to a medical problem like a brain trauma or stroke resulting in a fissure. Or the cause can be unknown. It can mildly affect them or be more severely limiting.

A recent example is that of  Rep.Gabrielle Gifford who was shot on Jan 8, 2011.  As a result of the gunshot to her head her speech as well as her motor ability was affected. Below is a video from the Huffington Post with Rep.Gifford speaking. Remember she has come a long long way with hours of therapy. And she is very lucky to be alive.

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As a physical therapist I have worked with many patients or clients who had speech problems for many decades of my life.  People with strokes, multiple sclerosis, ALS, Parkinson's,traumatic head injuries and young children with developmental disabilities. Many of them had speech disorders and or language disorders. I wish I could tell you that I found it very easy and did a wonderful job in understanding and working with them.

The truth was I had a lot of difficulty at first and had to learn to listen carefully and not be afraid to say would you repeat that? I want to understand you.  It's my fault not yours. And over time I did much better.

I remember going to a lecture where a lawyer who had cerebral palsy also had a speech disorder. Her lecture was about the disabled and the legal system.  At first I couldn't understand her and felt angry, frustrated and annoyed. But I wanted to hear what she had to say .  So I basically zeroed in (Zen like) and listened very carefully. And 10 minutes into her lecture I heard everything she said and understood it all. In someway it's similar to listening to a person with an unfamiliar accent.

When the lecture was over I went to lunch with the other people at the lecture. We discussed her speech disorder and many of the members there also had the same problem I did.  Some of the people were not able to understand her as well as I did.  Others didn't have a problem at all. Those that had no problem  were the people who worked with the developmentally disabled and had accustomed  themself to listening and understanding people with this particular speech pattern.

But they all felt the lecture was well worth it. And everyone had the greatest admiration for her. In fact this was 50 years ago and is still very much in my mind.  I guess she made a lasting positive impression on me.

I also have a son with a mild neurological problem that affected his motor skills and his speech. The motor skill's are hardly visible now that he's become an adult. But except for bike riding he's not into sports. But speech can still be a problem.  His problem is in expressive language. He's very bright took advanced placement courses in high school and graduated from a top college. But he can not fluidly express his views or opinions easily unless he prepares ahead of time. The place where it's most frustrating to him is when he's at social events which he does go to. And it's because you  converse many times in groups where you are expected to speak fast back and forth. If you have to organize your thoughts before you speak so your speech is fluent people have moved on.

Ironically with my multiple sclerosis I can also have a speech problem called dysarthria. Because of weakness in the oral muscles the co-ordination with thoughts being expressed in speech become slower and can actually start to slur. But my biggest problem is word finding which to me is really disruptive in a social situation. It's beyond the "senior moment" category.  One of the things I found that large noisy groups tired me and made my speech and word finding worse. Discussing this with a Neuropsychologist affirmed my decision to look for small groups and rest always before I go out and need to converse.

I do understand my son so much more now that I have a problem myself and have greater respect and admiration for how well he's done with his life.

Being able to handle your own speech problem is critical to a full life. Just as the person with stuttering did most people with speech problems have years of speech therapy. Which is very helpful for them like with Rep. Gifford. But it is not always a cure. Therefore learning how to handle your speech idiosyncrasies is critical. It is important for both the person with a speech problem and the person your talking to. To communicate you must work together to improve interactions. Here are some tips for both speaker and listener.

    Tips for the Person With A speech problem

 Introduce your topic with a single word or short phrase before beginning to speak in more complete sentences
    Check with the listeners to make sure that they understand you
    Speak slowly and loudly; pause frequently
    Try to limit conversations when you feel tired, when your speech will be harder to understand
    If you become frustrated, try to use other methods, such as pointing or gesturing, to get your message across, or take a rest and try again later

Children may need additional help to remember to use these strategies.

Tips for the Listener

    Reduce distractions and background noise
    Pay attention to the speaker
    Watch the person as he or she talks
    Let the speaker know when you have difficulty understanding him or her
    Repeat only the part of the message that you understood so that the speaker does not have to repeat the entire message
    If you still don't understand the message, ask yes/no questions or have the speaker write his or her message to you.

  I also asked my son to write a little about his own experiences with his speech  problem, here's what he had to say.

These are my main problems: when I'm trying to talk while working out what I'm going to say, I can have a tendency to insert filler words and sounds when the specific words aren't coming together right. Alternatively when I have exactly what I want to say worked out, (like when the topic is one I'm familiar with) I can start talking faster and louder than is appropriate.

The main thing I've learned in trying to improve how well I can talk, is the importance of listening well. I've had to practice condensing what I say into smaller bits of speech, which helps me avoid both cascading filler words, and creeping volume. The only advice I can think of if you're talking to someone who has a problem like mine is not to be afraid to say, "You're sounding a little incoherent, do you need a moment to compose your thoughts?" or "Could you talk a little quieter?"

When dealing with someone with a speech problem, don't be afraid to talk about the problem if it will help you understand each other. Remember, speech is only the method. The goal is communication.

Have a wonderful Holiday Season!

ellie            

Seven percent of Medicaid long term care users( the elderly and the disabled) use 52% of all Medicaid Spending . This is according to the KAISER COMMISSION ON Medicaid and the Uninsured. This is not something that everyone is aware of.

As I mentioned in my last blog that Community Living was less expensive and was desired by a large percentage of people who are currently in nursing homes.  It also fulfills the legal requirements of Olmstead. In 1999 the  Supreme Court ruled that the ADA legislation meant that people with disabilities should be living or educated in the least restrictive environment.

This past week there were two articles that reinforced to me that Community Living should be put on the "front Burner".  . It will save money in Medicaid as well as meet patients needs and follow the Olmstead requirements. But it will take careful planning as each state controls  Medicaid in their state. And that means how Medicaid money is used  and  which citizens are able to access it

The first article was in the New York Times. It was a shock to me as I am a senior  person with a disability due to MS in New York State. The article was based on a scorecard by the AARP which rated all 50 states and the District of Columbia on the availability and quality of services for long-term care.  My state New York rated 44th. Minnesota, Washington and Oregon were at the top of the list, while Mississippi, Alabama and West Virginia brought up the rear.

My state NY  had several areas for its poor marks. Interestingly it ranked 50th in the percentage of the disabled adults that were living in the community (Community Living) and receiving the care and the support they needed.  It also ranked a poorly ( 48th) on support for family caregivers. What this refers to is respite care and access to counseling. Yet as NY ranks 2nd in enrolling low-income disabled adults in Medicaid it appears to be a priority problem. Which they must solve.

The second article was in the Washington post and it and concerned the care of people with Alzheimer's in the United States.This diseases affects 5.4 million Americans currently and in a rapidly aging population it could be a budget buster for Medicare Medicaid and families.  In the article they mentioned that President Obama was developing a national  plan for both research and help in the care those with Alzheimer's and their families. Here again family's want to be able to care for their parent or spouse with Alzheimer's Disease in their home as long as they are able. So after they have used up all their money and will need to use Medicaid in the current situation they would not have to place their parent or spouse in a nursing home. Here again Community Living would solve their problem as well as decrease cost for the State.

For more information on what your state is doing: http://www.longtermscorecard.org/

One of the hundred's of Monarch Butterfly's that visited my

Butterfly Bush in my garden this summer.

Be well, ellie

Living in the community is a long cherished dream for many with disabilities. But it was the awareness of the care of those with developmental disability 's that started the ball rolling to question why were we institutionalizing the disabled. In fact seeing the treatment of those who were in institutions was one of the factors in the passage of the ADA in 1990. This was following up by the Olmstead Act in 1999 after cases were brought to the Supreme Court. The Supreme Court's decision settled the issue legally. Their ruling was that people with disabilities have a right to choose the least restrictive setting whenever it was possible. That meant not forcing them into segregated settings in order for them to receive their necessary services thru Medicaid.

Yet it's been a slog with many who have had to fight the established system to be able to return to a life integrated in the community. In fact there have been 89 'Olmstead ' lawsuits in 35 states and 90 'Related cases to Olmstead also in 35 states.

It's now 2011 and only 26 states have published Olmstead plans and 18 states have   alternative responses. And there are still seven states (DC,FL,ID,NM,RI,SD,TN) who have neither an Olmstead plan or an alternative response to Olmstead. For more information from this report go to : http://www.facebook.com/event.php?eid=133211216769552 

The average cost of a person with a developmental /cognitive disability living in a State Institution in NY State  is $365,000 compared to 1/3 of that cost in a group home. The average annual cost of a nursing home nationally is about $75,000, according to a study by the AARP. Community services that allow people to remain at home are about $23,000.  One in Five (270,000 out of 1.35 million) nursing home residents indicated they would prefer to live in their community according to a survey by the centers for Medicare and Medicaid services. 

Change is hard! And not everybody wants change.  I think a look back in time would be useful and put current issues into perspective.

Prior to the late 18th and early 19th century people with developmental disabilities lived in the community mostly with their extended families. Their quality of life depended on their family and the community they lived in.

However, the enlightenment movement changed this. This worldwide movement felt that all people were capable of reasoning and we should look to the similarity in people as this was more important than  differences.  This philosophy led to the  establishment of State Schools to prepare individuals with disabilities for employment and independence.

However outside these school's no other opportunities were developed for living in the community and employment.  This was also the time when school's for the deaf and the blind were also established.

Sadly by the 1920s the State School's focus unfortunately  went from educational and independence to custodial care.  Younger and younger children were placed in the care of the State Schools.  The eugenics movement with forced sterilization of disabled and mentally challenged people including children was prevalent at this time. In fact over 30 States adopted compulsory sterilization and more than 60,000 disabled  people were sterilized.

In the 1930's the placement of disabled people in State Schools grew remarkably due to the financial burdens people had in the Depression.  New born infants were now left in the care of State Schools. The school's became grossly overcrowded and underfunded. Sadly the life expectancy of a child in a State School was 18 years of age.

There was no change in this horrendous situation until the 1960s when President Kennedy raised the awareness of the status of people with developmental disabilities.  He appointed a special panel on mental retardation.  The goal was to improve their care and develop new appropriate programs for them.

The Civil Rights movement also inspired many to think differently about the developmentally disabled/cognitively impaired. The Special Olympics at this time was also being born in the home of Eunice Shriver who was President Kennedy's sister.

Then in the 1970's there was the explosive exposure by newspapers and television of the deplorable conditions at the Willowbrook State School in Staten Island N.Y.

It was a barren warehouse for the cognitively challenged/developmentally disabled.

And it was not unique in State Schools across the country.

Here to the shock of many the children lay naked and untended on the floor in locked wards.

A lawsuit was filed against the State of New York in 1972.

In 1975 a Consent Judgment was signed in Federal Court allowing the residents to be transferred to group homes .

The last children of the original 5000 left the Institution in 1986. http://link.email.washingtonpost.com/r/1BAF0O/A7IF55/4C53BU/Z9QCTK/98LYW/YT/h

This started the movement to de- institutionalize those who were developmentally disabled/cognitively impaired.

In 1970 to the world's first Center for Independent living was opened.

In 1973 The Rehabilitation Act addressing the discrimination of disabled people passed.

In 1975 the Education for All Handicapped Children Act was  passed guaranteeing those with with disabilities the right to a "free appropriate public education." In 1990 the law was renamed Individuals with Disabilities Education Act.

In 1985 The Mental Illness Bill of Rights ACT is passed.

In 1990 the most sweeping disability rights legislation in history The ADA passed.

In 1999 the Supreme Court ruled in Olmstead vs. L.C and F.W.

And here we are: Still fighting but making slow and steady progress.

An inspiration and a reminder of what is possible.

More on Community Living and Long Term Care for the disabled and elderly in my next blog. Meanwhile as promised I leave you with one of the pictures from my garden.                                                                      

         ellie

And what role should society play when these things happen? This is a question that is again re-surfacing that must be answered if our capitalist country remains a strong democracy. I am reminded of the 60's when I was strong, active and healthy in my late 20's.  People remember different things about this tumultuous decade. The hippies, Vietnam, riots and marches etc..

I also remember that Civil Rights was becoming a large and immediate issue with the desegregation of schools. But finally the Civil Rights Act was passed in 1964.  This was the beginning of our society's awareness of the lack of civil rights for all of us including the disabled.  Although it took 30 more years for the ADA to pass.

I also remember in 1965 Congress passed Medicare and Medicaid in an amendment to the 1935 Social Security Act (the year I was born). This and the Civil Rights Act like Social Security 30 years before had been a long time coming.  There were people on both sides of the issue that felt strongly for and against.  Obviously more supported the Acts and Amendments and they passed.

If you follow the news you are aware that they are still controversial with some people as is the Health Care Reform recently passed. I myself am a very strong advocate of universal Health Care with manageable costs.

In the 60's I was front and center to see the needs of many of the people in our country. I was working for much of that time as a Home Care Physical Therapist in Brooklyn N.Y.  I lived in one of the best areas. I also saw patients in their homes there as well as the worst areas like Bedford Stuyvesant.

What I saw formed my thinking of the need for constant vigilance to protect the people who had bad things happen and then became one of our vulnerable. And I realized that in order for society to play a meaningful role, government had to be involved. I welcomed the passage of both of these Acts as I did 30 years later when the ADA passed.

We have made a lot of progress in both health care and civil rights since the sixties.  But unfortunately slowly we have lost economic equality. The rich are getting much, much richer and have increased their influence and power on our government. While the rest of us (90%) are losing. In the current recession all the past decades of  bad eggs are coming  home to roost.

We have very high levels of unemployment (where are the jobs ?) this is only going to foster tremendous problems down the line. Will we have a lost a whole generation? What about all the hope the disabled community was beginning to have?  We were just beginning to establish our civil rights as natural to our fellow citizens.

Below is a poem by Jane Mayhall that was published in a book "GIVERS AND TAKERS 2"  in 1966.    It was relevant then and is relevant now.

NOTES FOR THAT BIG GOLD BOOK

All evaporated, nobody real.

Yesterday was not so much better.

Then I didn't try or exert. 

When good- looking couple

made nasty fun of cripples,

I thought," oh well, the sins

of the world."  I was an easy-going

snob.  And the couple seemed to me

no more capable than worms,

I  know now, they rule the ramparts

of the sky.

To evaporate is to die.

The standards are collapsed.

Jiggling  puppets of wickedness

flay their victims, victims

flay their gods.

We are dawdling and obscene,

Slaves to catastrophism.

(Nothing was intrinsic but desire.)

What is the difference to me ?

My muscles ache like foam

bristling on the waters.  Disillusion,

emptiness conjoin.

But I feel a raging impulse:

"Listen to me, world.  Now you

Must change. "

   And change we can. We can do so much better.  We have to think beyond ourselves. We have to accept our responsibilities to our fellow citizens. We must remember we were once a society. Most of us once felt that we are all in this together. I hope and pray we can do this again.                   ellie

 

                                     

         A female Black Swallowtail Butterfly  visits our garden for sustenance.