The Hardest Job in Direct Support

I have recently had occasion to meet with and talk with people who supervise and manage direct support professionals. From Portland, Oregon to Portland Maine, I have heard stories of great wonder and stories from hell.  The common theme throughout most of these stories is quite the same.  It is clear that frontline supervisors in the field of direct support have the hardest jobs of all the ranks. Let me explain.

Sherry  (her real name I will change to protect confidentiality) is a manager of a group home somewhere in New England.  She was telling me of a recent time when she was faced with an upcoming state licensing survey of the group home she managed, the training a new DSP, the ongoing support of a person who was in end-of -life care and also a personal issue that seeped into her work.  She indicated that the problem she faces each day that gives her the most concern is hoping that the people in the group home she oversees are "happy".  Sherry admitted to feeling overwhelmed at the impossible task of answering to so many people.  I listened and realized something.

I talk often about the most important people in the system, the people we support and the direct support professionals.  Yes, they are.  However, in the last few weeks, after meeting with hundreds of frontline supervisors, I can conclude this.

Frontline supervisors and managers of direct support professionals have the HARDEST job in direct support.  More power to them.  I hope that in the next few years as standardized frontline competencies unfold that we take some moments to thank the people who have the HARDEST job in direct support. 

T'was The Night Before DSP Week 2013!!!

Sample of NADSP Code of Ethics Shirt designed by our good friend Mary Lawson of Nebraska...see www.dspwear.com

T’was the night before National DSP Recognition Week 2013, 

when all through the house

Not a creature was stirring, not even a mouse;

The MARs were hung by the chimney with care,

In hopes that State Surveyors soon would be there;

The people supported were nestled all snug in their beds,

While visions of ethical DSPs danced in their heads;

And the House Manager in her 'kerchief, and I in my jeans,

Had just settled down to fix the Cuisinart food chopping machine.

When out on the lawn there arose such a clatter,

I sprang from the chair to see what was the matter.

Away to the window I flew like a flash,

Tore open the shutters and threw up the sash.

The Executive Director had pulled the Fire Alarm,

And I knew I was not going to be able to eat my Eggplant Parm,

When, what to my wondering eyes should appear,

But a bunch of other DSPs from behind the rear,

With a little old driver, so lively and quick,

I knew in a moment it must be DSP Nick.

More rapid than tweets his peers they came,

And he whistled, and shouted, and called them by name;

"Now, DSP, Dasher! now, DSP Dancer! now, DSP Prancer and DSP Vixen!

On, DSP Comet! on DSP Cupid! on, DSP Donder and DSP Blitzen!

To the top of the porch! to the top of the wall!

Now take care and support the people in the Fire Alarm Drill"

As dry leaves that before the wild hurricane fly,

When DSPs meet with an obstacle, mount to the sky,

So up to the house-top the Direct Support Professionals they flew,

With the knowledge of ethics and DSP competencies too.

And then, in a twinkling, I heard in the garage.

The sound of DSPs documenting this barrage.

As I drew in my head, and was turning around,

Down the chimney DSP Nick came with a bound.

He was dressed according to the agency policy from his head to toe,

And something he thought that all DSPs should know;

A DSP Work sample was under his arm,

And he looked like a farmer tending his farm.

His eyes -- how they twinkled! He knew he was to be credentialed!

He knew he was loaded with DSP potential!

His happy little mouth was drawn up like a bow,

And the beard of his chin was as white as the snow;

The Code of Ethics he uttered his breath underneath,

And the Advocacy he had with the people he supported encircled his head like a wreath;

He had an ability for justice fairness and equity and self-determination,

That shook, when he He knew that soon throughout this great nation.

He would hear people thanking DSPs of all races,

And celebrate the good work of the dutiful graces;

DSPs were to be honored and given their due,

And people from all over would see their value too.

He spoke not a word, but went straight to his work,

And reviewed his portfolio; then turned with a jerk,

And laying his finger aside of his nose,

And giving a nod, to DSPs in that house he spoke;

He sprang to his agency van, to his team gave a whistle,

And away they all flew out of town with a bistle.

But I heard him exclaim, ere he drove out of sight,

"Happy National Direct Support Professional Recognition Week 2013, and to all a good-night."

..on the beach..

I just returned from vacation in a resort beach town on the East Coast of the United States. While there I watched something wonderful.  As I sat and played on the beach with my daughter, I watched a family supporting their daughter with Down Syndrome. The reason this was so compelling and noteworthy to me was two-fold.  In 2013, we see families and communities who embrace, enjoy and recognize the beauty of diversity. It was wonderful to see this beautiful little girl enjoying herself.  I remember a time when I was in grade school when kids with disabilities, exactly like this little girl on the beach last week, DID NOT HAVE A CONSTITUTIONAL RIGHT to be in class with me. Now, to see a 2 year old girl embraced by her family, enjoying the wonders of the sea shore and getting positively supported in her developmental stage by her family and the friends she was with struck me.

The other thing about this seemingly benign observation was a deep thought I had.  Over the years of doing direct support and working in all different types of provider settings, I imagined something wonderful.  The parents I sat next to on this beach will most likely never "place" this little girl in "treatment" or residential services.  I may be wrong and I cannot predict the future but.....I overheard them, I watched their incredible support and had a gut instinct.  This little girl can NOW get all types of services, supports and "treatments/therapies" at the discretion and direction of her parents. They were talking about a variety of "early intervention" services they used.  In 1973, when I was in school, this was essentially unheard of.  Then, little girls with Down Syndrome may have gone to the beach with their families but many of those 2 year old girls with that particular disability in 1973 were going to end up in some type of service setting or an institution.

As I reflected that afternoon on the beach I thought that times have certainly changed. The world has become a bit more tolerant, understanding and appreciative of developmental disabilities and children.  We know so much more about things like "early intervention" and we know that institutions are not places where human beings should live.

Importantly, we now have a profession in existence that promotes justice, fairness, equity and inclusion for the little girl I watched on the beach last week.  If she should need the assistance of this type of professional both she and her parents can be assured that profession is called direct support. If they should need competent and ethical direct support professionals they will have  over 2,000,000 of them to call upon in the coming decade.

DSP....Direct Support Patriots!

I feel a need to express my gratitude to the tens of thousands of direct support professionals who are working this July 4th throughout the United States.  To me, these direct support "patriots" are truly helping thousands of people with disabilities secure freedom and justice.  Patriots are people who love their country and it's way of life.  Justice and equity are the basic foundation that the Constitution of the Untied States is founded upon. Goodness knows that ethical and competent direct support professionals are constantly ensuring that justice, fairness and equity flow evenly for those they support.  Often, people with disabilities can experience barriers to such freedoms so many of us take for granted.  There are frequent moments in the daily work of a direct support professional where they help the people they support overcome such obstacles. One of the tenets of the National alliance for Direct Support Professionals Code of Ethics is Justice, Fairness and Equity. It states; 

As a DSP, I will promote and practice justice, fairness, and equity for the people I support and the community as a whole. I will affirm the human rights, civil rights and responsibilities of the people I support.

As a DSP, I will:

• Help the people I support use the opportunities and the resources of the community available to everyone.
• Help the individuals I support understand and express their rights and responsibilities.
• Understand the guardianship or other legal representation of individuals I support, and work in partnership with legal representatives to assure that the individual’s preferences and interests are honored.
  
  

I think this July 4th holiday is good a day as any to salute the 1.2 million strong, direct support professional workforce of the United States who are indeed patriots and professionals.  Lastly, as stated directly from the NADSP Code of Ethics, direct support professionals who follow the code "assist us all in staying the course of securing freedom, justice, and equality for all."  So, if you see a direct support professional, please tell them thank you. They are just as much patriotic and as important as the soldiers who protect our country from enemies, the police officers who protect our domestic interests and anyone who loves this country for the freedom we cherish.  Hey, you likely  may be relying on a direct support professional to help you ensure your freedom someday!!  Happy Independence Day!!

THIS is inclusion! Rock on!!

This photo came from a Facebook post from a group page called, "Handicap This". I do not know the person or what/where the concert is.

Hi everyone. Been a long time since last post. Sorry but have been really jammed with doing great things and literally not time to post as much as I was writing a few months ago!  Just a quick review of what I have been up to and a short blog "blog- opinion".

Here is my post and latest "blog-opinion". I was really inspired by the Facebook photo above. I see tons of stuff on Facebook that are "inspirational" or try to be such. Most of these types of photos and bits are token-izing of people with disability and frankly.....very sappy.   This photo grabbed me by the arm and shook me.....THIS, my friends,  is a photo of pure INCLUSION.  Period.   Maybe it is because I am a middle aged rock and roll fan.  Maybe it is because I have spent my professional life as a social worker fighting with people to get those with and without disabilities a level playing field for life.  Maybe it's because the guy in the picture is shooting the "horns" at the sky in true rock and roll glory.

I just feel that this photo gives me lots of hope for  the civil rights struggle to get people with disabilities joined with us all deep inside of our society. I feel this photo distills everything I have learned and heard and believed from the likes of; Ed Roberts, Dr. Beth Mount, Dr. Al Condeluci, John O'Brien, Michael Smull, Lynne Seagle, Norm Kunc and EmmaVanderklift and the countless other "inclusion-ites"!!! 

I Love this photo so much for so many reasons.  Rock on!!!

If interested, here is what I have been doing since March.  Between April and May I have been working in Kansas, Vermont, Washington DC and all over NY State and NY City.  I have worked with several agencies and have interacted and been with hundreds of direct support professionals. I am preparing materials to teach an online course for The City University of NY on Supporting Adults and Children with Disabilities.  However, I have been working mostly on a really awesome Code of Ethics project with the NADSP (National Alliance for Direct Support Professionals) and The College of Direct Support/Direct Course Online  featuring short films about the Code and using actors who are people who experience disabilities and direct support professionals...stay tuned on all that!!

Hope to post a bit more often!

LIGHT in some dark "NY Times"!

My friend, Don Traynor of The Resource Center in Jamestown, NY, spoke of an"ugly gift". It was given to the world on March 12th, 2011 in a NY Times article written largely by reporter Danny Hakim. It was the opening salvo of a series of close to 20 articles about abuse and impunity committed by direct support staff at state run group homes and developmental centers as well as non-for profit voluntary service providers. The articles had some terrible reports of horrible instances of abuse and neglect of people with disabilities by the hands of direct support professionals. The articles created a storm of change and reformation in the NY State system of care and support of people with developmental disabilities and their families. It has been an ugly two years in NY State in many ways.

HOWEVER.....we received some wonderful GIFTS, from these developments....let's take account...

• Commissioner Courtney Burke was appointed as the leader of NY State Office for People With Developmental Disabilities

• NY State OPWDD adopted the NADSP Code of Ethics.

• NY State OPWDD created the first statewide Core Direct Support Professional Competencies.

• NY State established a Justice Center for People with Special Needs

• Provider agencies began to see that direct support needed to be recognized more seriously as a profession and craft rather than the "cost of doing business"  
• Many, many other positive things have happened in spite of the articles defaming and blasting the evil-doing direct support staff throughout the state. Yes, there are some bad people out there..... they are few in comparison to the kind you can read about below!!  Please read this light from Jamestown, NY....

... in Western NY State a few dedicated Direct Support Professionals from one particular agency decided to go full throttle  DSP-C...   Read the story here........

There is light in the darkness.....

Quality...JFK Jr. is watching!!

Since last Thursday the NY State developmental disability provider community has been reeling. 240 million dollars in spending cuts to the NY system will be exacted soon. The reason for these cuts?  Well, frankly......I have my opinions and view points about why.... however, those opinions will remain with me and my friends.

Direct Support Professionals will be impacted by these upcoming slashes. No doubt. I am worried.

But, here is my hope and dream....

As provider agencies begin to do more with less and as "over-extension" begins to creep into the mouths of all levels of organizations doing the noble and challenging work of supporting people with disabilities, there will be an epiphany. I do believe that executives, clinicians, professional staff and policy makers will start to understand what John F Kennedy Jr. said almost 20 years ago. He said, "quality is defined at the point of interaction between a staff member and a person with a developmental disability."   As a powerful advocate for direct support professionals, he was a founder of the NADSP (National Alliance for Direct Support Professionals).  John also was a visionary.  We are about to see where quality occurs in our system.  Direct support professionals have been at the crossroads where quality and support meet for many years.  I believe we will be compensated and evaluated by this definition as our system evolves. And why not?

This fiscal crisis is about to put a spotlight on the importance of direct support.  Quality is NOT determined by the landscaping of group home yards, new vehicles, large foundation board funds and nice high-tech training rooms. It is not defined by regulations. Those things are very nice and important but I think (my opinion) that we have placed too much emphasis on that stuff.  Now, my friends, we are in a defining moment.  Interaction between people with disabilities and competent and ethical staff is about to take the lead and spotlight as it should have years ago. We will see why and how a skilled workforce is so important over the next few months and years.

I do have hope that as we shuffle through the upcoming months of uncertainty and fear that we never lose sight of what is important; that the 120,000 people in NY State who rely on staff members to provide quality supports keep getting just that.......daily high quality interactions and support.  It is up to all of us to keep John F Kennedy Jr.'s definition alive and relevant in 2013 and beyond.

I got HIT on the Prairie

Sorry about the provocative title of the blog.  But, as promised, I wanted to write about my terrific experience this week in Bismarck/Mandan, North Dakota at a great organization called, H.I.T. Inc.. 

Logo of this wonderful agency.

Well, I guess I did get "hit", but in a real positive way....
I was asked to come to present several NADSP Code of Ethics Encounters.  Overall; in one day I was able to meet some people whom HIT supports, visit some of their programs, meet most of the leadership team and spend time facilitating three Code of Ethics Encounters with well over 300 HIT Staff members.  They were remarkable people and let me tell you how I got HIT!

John's HIT 1.   The person-centered language was audible.  Sometimes when I visit organizations, person-centered language is hit and miss (excuse the pun). At HIT, there is obviously a culture of respectful language.  I did not hear the words or phrases; consumer, wheelchair-bound or "had a behavior".....there is a clear person-centered and respectful lexicon in use among the staff.

John's HIT 2.   The organization deeply values Direct Support Professionals. The resources that were utilized for this day, and from what I can see in terms of the other offerings for Direct Support Professional development and education, were abundant.  Direct Support Professionals are respected and honored at HIT.  They are being viewed more and more as key players in the teams that support people with disabilities. They have a fair amount of authority and add to the decision making process each day. I spoke to several DSPs and this was validated.

John's 3rd HIT (and maybe the best hit....)  I asked the leadership team a question at lunch.  I asked, "Why is North Dakota so good at supporting people with developmental disabilities?  You guys are known throughout the country as being progressive and excellent at support?"   The answer was simple yet very profound...and what all of us in the country should be considering.  I was told that the state of North Dakota is like a big small town community. Granted it is a small state with relatively few providers and people supported. However, there is a clear "responsibility" that is shared for  looking out for each other regardless of ability or disability. Perhaps it is the influence of Nordic/Scandinavian ethnic cultures (cultures known for respecting and revering people with disabilities) that settled the Dakotas, but ultimately there is a strong sense of mutual respect among North Dakotans.  Sure, there have been legislative things and scandals that have helped bring services and supports to a higher level, but it is clearly in the culture of the state that brings a brighter future and hope for those who rely on support.

I hope to visit my friends at HIT again very soon. They are a Direct Support -Centric organization. I can't wait to see what they will do next to promote the value of their direct support staff!
Thanks to Christina Tosseth and Jeff Essler for hosting me and giving a warm North Dakota welcome even though it was 30 below 0 with a wind chill. Did not even feel it.....Thank you!!

DSP Eulogies/ Jan 23rd Intl Day of Mourning pt 2

For many years I worked in an agency where we supported people who once lived in institutions.  They would come live with us, have a better and more meaningful life and often come to die of old age or associated stuff.... I have attended countless funerals for people who died living their lives in a modern group home versus dying inside a cold institution.  It was always an honor, a privilege and huge responsibility to ensure that the people had a send off and funerals that were just like those of people who did not experience institutional life.  As we know, many people died alone in institutions, with no name and more tragically no memorial other than a stone with a number if they were "lucky". 

Anyway, at this agency where I worked, funerals, as sad as they were, represented a significant level of dignity and celebration.

Enter, 3 twenty year old Direct Support Professionals who made sure that Margaret had a really good and dignified send off. More about them in a moment.

Margaret was 95.  She lived 55 years in an institution. She lived 40 years in a group home. At the end of her life she was supported and loved by at least 30 DSPs, each a fraction of her age.  She died of natural causes and had a really good run!

Margaret had no family other than the one that was developed at the agency in which she lived the final 40 years of her life. The DSPs were her family.

When Margaret died there was a minimal amount of fanfare. She had a very typical and standard funeral except for one significant thing.  The priest who was "assigned" to her service (she was Catholic) was an itinerant priest and was mandated to preside/officiate her Mass. Well, he botched her name, did not talk at ALL about her and essentially he was an embarrassment.  After 95 years, I hope that the person responsible for introducing a soul to the next world will have a slight clue about that individual.  He did not.  THe DSPs who loved Margaret were really pissed off. 
We had the Mass and were all left with a bad taste in our mouths.  The priest was clueless.  We all departed for the burial.

At the burial there is more stuff that takes place in Catholic rites. The priest did what he had to do. Frankly, it was pitiful.  Immediately prior to the burial and lowering of the casket into the ground, 3 Direct Support Professionals came to the graveside!!!! 

They demanded a eulogy.  They created one.....

Each one accounted in incredible and loving sharp detail the life of Margaret. For close to 30 minutes each of the DSPs with great emotion and love eulogized Margaret. They did this in such wonderful reverence and respect there was not a dry eye in the county. They knew everything about her.....her favorite foods, her dreams, her secrets, her passions.....These DSPs knew this woman as though they were her family.  Well, in fact....they were her family.  I was humbled, inspired and knew at that moment I was in the presence of holiness and love.  They knew her much more than an assigned itinerant priest.  Thank goodness.  Margaret was buried with love and respect thanks to these young DSPs.

As we think of people with disabilities this day let's also consider the tens of thousands of DSPs who ensure that the people they support die in a person-centered way.  Death is part of life. DSPs are a huge part of the dignified death of many people who would otherwise be given to eternity without a fair and loving send off.

Thank you DSPs for what you all do at the end of life as much as during it! 

Jan 23 Intl Day of Mourning and Memory for people w disabilities

Please take a moment on Wednesday January 23rd, 2013 and reflect, remember and celebrate the lives of people you may or may not have known who are gone..... people who had disabilities and perhaps left the world without much fanfare, love or even consideration.  Thanks to Dave Hingsburger this day is dedicated to mourn people with disabilities that have since left the earth.  Please read this segment from Dave's blog of last year and learn all about this important and reverent day.  

There is a Facebook page also devoted to the cause. Please visit here.

It's a small world after all.

Thank you all for understanding my absence this past month or so.  I am back from Japan and back in action! 

This past week I visited North Carolina with Joe Macbeth and presented the NADSP Code of Ethics to a wonderful audience of 250 North Carolina DSPs!  They were all terrific and presented with very person-centered language and heartfelt commitment to people with disabilities.  Many agencies from all over the entire state of North Carolina sent direct support staff to enjoy a day of education, development and networking.  The North Carolina Council on Developmental Disabilities was one of the proud sponsors of the event and for more info on them, please see the link. 

Coming back to the United States from Asia is always a difficult transition for me.  However, this return was sweet and going to the great state of North Carolina as the first gig of 2013 and as my first experience back in the saddle in my country was very meaningful.  DSPs in the south are no different that DSPs in the northeast.  They are no different than DSPs on the west coast. They are really no different than DSPs from Japan.  The unifying and common denominators are simple.  Direct Support Professionals understand the value of people with disabilities.  Direct Support Professionals see that people with disabilities are people first and that their role is to support and help give foundation so that people with disabilities have a level playing field.  Direct Support Professionals have an obligation to be ambassadors for the people with whom they work so they have access and opportunity in the world; the big beautiful world we all share.  It is a small world after all.

Next week I will visit H.I.T. Inc in Mandan/Bismarck North Dakota and spend a few days spreading the good word about the NADSP and the Code of Ethics.

It is great to be back home.  2013 will be an important year for direct support....guaranteed.

Happy New Year and Happy Birthday Harumi

So sorry for the radio silence on the blog.  I am in, and have been in Japan, since December 21st. As many of you know my mother in law has been gravely ill. She passed away with myself and her family by her side early in the morning on December 27th.  Harumi-San Yoshizawa was a beautiful mother, grandmother and woman.  Today, January 4th, would have been her 73rd birthday. Please raise a glass, say a prayer and send her a great thought today as you read.  I will be back with more Direct Support Professional blog entries upon my return to the United States on January 9th.  Looking forward to a good 2013!  I feel this will be the year for Direct Support Professionals to be heard, seen and celebrated!  More soon...

Harumi is the vibrant woman on the left. Julia, my wife and Maya my daughter are on the right....may Harumi-san rest in peace.