Sunday, July 26, 2015


New York State has just created access to a “living wage”, I suppose, for those who are employed in the fast food industry.  Those jobs are completely justified in bearing a fair wage such as 15 dollars per hour.  I wish more power to all those people who look to that type of employment for making a living. Frankly, many people who do that work should earn even more, in my opinion.  Especially, the people who need to engage with the public; those cashiers and order-takers and drive-thru folks. They often bear the burden of frequently rude customers and work in stressful environments.  I think those in the retail industry also deserve higher wages for similar work they perform unassumingly everyday.

You probably think I am about to make the case that direct support professionals should be at equal wage level to fast food workers and retail clerks. Especially as we see the NY State legislature, among others in the country, raise the minimum wage for those sectors.  I disagree whole heartedly.

Direct support professionals should NEVER be in a category with fast food workers and retail workers. Never. I say this with great respect to those in that are employed in that field. My point is that the profession of direct support is not a JOB.  Direct support is a profession and professions automatically demand fair and living salaries.  Professionals are developed, educated and expected to perform at a level of great demand thus should be compensated for that effort.

My concern is that advocates for direct support professionals  and direct support professionals will feed into the notion that direct support pay should be increased and that we should be in equal footing with the fast food industry.  Do not be fooled.  Direct support involves complex skills, a code of ethical conduct and a knowledge base of dizzying proportions.  Of course compensation should greatly improve.

Direct support is not a job. It never has been.  Sadly, our society sees it as an entry-level job.  A stepping stone type of work that can set you forth to other careers like social work or nursing etc.. This is precisely the reason we will not see anything but the continued decrease in wages for direct support professionals and the continued silly game of demanding a few dollars more for the "job" of direct support.

The rally cry we need to set forth for the direct support professional wage crisis is this.  All of us reading, probably and mostly direct support allies, need to start having serious and much more frequent conversations with the legislators, policy makers and insurance companies who will ultimately be able to create rates and wage policies that are commensurate with a profession, NOT A JOB! 

Organizations like the NationalAlliance for Direct Support Professionals need many, many people to help with this effort and campaign.  We should not get caught up with the “smoke-screen” of this fast food wage news. Good for them.  All of us should rally to help the world understand that direct support is a rewarding profession. When was the last time you heard about dentists, doctors, lawyers or nurses needing to plea and rally for a living wage?  You won't.  They are recognized as valuable professional careers. 
 So, don’t get caught up in the hype.  Direct support is the next great profession!   If we see the path other professions, like nursing and social work, have taken, we are coming world!

I have a dream that we will very soon see our day of professional wages.

Tuesday, November 25, 2014

The DSP Problem

The DSP Problem

It has been a long while since my last post.  In fact, the last blog created a wonderful stir among the little community that reads my stuff.  I am about to make another potential stir.  I am ready. Hope you are as well…

For the past few months I have heard a few leaders of human services organizations that employ direct support professionals refer to something called, “The DSP Problem.” The theory behind the DSP Problem is that because direct support professionals are unqualified, undertrained, apathetic, unreliable and overall entry level pawns in a game that the issue of turnover, morale, abuse and neglect rests on the shoulders of the lackluster workforce.  Human service leaders are looking to correct the DSP Problem by increasing pay, improving training and finding “better” direct support professionals? The problem can be solved simply.  Right?

I believe NOTHING is further from the truth.   I do not feel that there is a “DSP Problem”. The 4 million people who currently provide direct support in the United States are very committed and professional people doing their great work, unspectacularly, everyday.  They help make the idea and notion of community living possible for many vulnerable and alienated fellow citizens.  The direct support professionals, aside from a scant few, are not the problem.

There is a “Leadership Problem”.   There are some wonderful and amazing leaders in our field.  I know many of them personally, and likely if you are reading this, you are probably a leader with whom I agree and respect.  The leaders in our field that refer to a “DSP Problem”, in my opinion, are finally beginning to see the vital role that direct support professionals have in the lives of the people they support.  States, municipalities, and organizations are now putting direct support professionals in a slightly more positive light and subsequently addressing the emerging profession of direct support by raising the expectations of the field.  Competencies for direct support professionals are being recognized and created.  Direct support professionals are beginning to be developed, educated and recognized as PROFESSIONAL.  This is a new day for DSPs but we should not view the situation as a “DSP Problem”.

I think the best solution for the “Leadership Problem” is to let the evolution of direct support take it's course!   Everyday, I have a great privilege to meet and work with direct support professionals.  I see their talent and skill.  I see the passion they have for their craft.  Most importantly, I see first hand what they do to improve the outcomes for people they support.  As managed care organizations and accreditation bodies like CQL (Council on Quality and Leadership) and NADSP (The National Alliance for Direct Support Professionals) continue to raise a bar for direct support, and as personal outcomes become the primary focus of our work, the leadership in our field will have to follow suit. On that note,  I work with closely several organizations throughout the country that are helping direct support professionals achieve a national credential.  (By the way they never referred to the "DSP Problem")!

Yes, there is a direct support workforce crisis (that was predicted 25 years ago by researchers and scholars) but the warnings were not listened to.  We will need 1 million direct support workers by 2022.  That said, with all the developing educational opportunities and career ladder options that are being established by progressive leadership in this country, we will see the “Leadership Problem” improve.  Thanks to direct support professionals and what they do each day to improve the lives of the people they support, leaders in the field (including me) will be humbled, will be inspired and most of all see there was never a “DSP Problem”.  We will learn from the DSPs who help create a world we everyone belongs. They will lead us. 

Happy Thanksgiving.  This year please make sure to thank a direct support professional.

Sunday, February 23, 2014

I "love" the guys....

Been a while since a post.  I am not as prolific a blogger as others in this cyber world of opinions and insights but I usually write when I am moved, inspired, pissed or feeling like something needs to be said.   Now, is one of those times.

I have been spending lots of time with direct support professionals these last two months.  I have probably have met with over 400 direct support professionals these past weeks and there is a serious concern.

Many direct support workers use a phrase that is all too common,  "I love the guys".  Worse yet is when I hear a DSP say, "I love MY guys"!  It is truly amazing how much this is said and how offensive it is. Let me explain.

Relationships that are created between direct support professionals and people supported should be based on professional competence and ethics.  It should never be based on "love" of the people or a notion that one "loves" the persons they are paid to support.  In fact, this is a dangerous idea.

 I have heard brand new direct support professionals, within one day of working with people with developmental disabilities, say..."I just love these guys"!  "They are like my family member already"!  I have even heard things like this: "If I ever leave this job or have to move or something like that, I will always keep in touch my MY guys"!   I cannot count the number of times I have seen DSPs, and other staff as well, suddenly depart willingly or otherwise from an agency or organization....more importantly, from the relationship where they "loved" the guys.....never to be heard from or seen again. 

To me saying things like, "I love my guys" objectifies people with disabilities, diminishes the profession of direct support and ultimately is an impossibility. (It is also sexist in that the term guys implies male gender)  I know of no other profession other than perhaps religious clergy where loving the customer is accepted.  Also, saying "my guys" implies your ownership and control "over" people.  This is totally against the message of our code of ethics and is a slippery slope into servitude. 

One may grow to love and respect a person supported but direct support professionals need to understand that their role is not one of family or friend.  The primary role is that of  assistant, stage-hand and ally.  Most certainly we can develop affection and indeed, love, over time as we grow in our professional relationships. However, to say that the reason we work as direct support professionals is our "love" of the guys is disrespectful and ultimately not true. 

Direct support professionals are often referred to as, "angels", "God's hands on Earth", "where the rubber meets the road",  and so forth.....Most people see the work of a direct support professional as something valiant or noble. Something that not just anyone can do or wants to do.  True, the work is rewarding and many great things occur in the the relationships that grow between DSPs and the people they support, but DSPs are not angelic or noble or otherwise (at least as a blanket idea for the profession).  

Direct support is a profession.  It is still being identified and developed but stands as a wonderful and meaningful career choice.  In this profession one may develop close and meaningful relationships with people.  However, never be mistaken that the work executed on a daily basis is rooted in knowledge, skills and is never rooted on the love of the people supported.  

So, if you say, "I love the guys" or "I love my guys" in your usual conversations,  I ask you to stop, reflect on this blog, and reconsider your role in the lives of the people you support.  People supported belong to themselves.  We do not own anyone.  We don't love everyone. 

As an alternative say, " I love my profession!"

Thursday, January 23, 2014

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

Today is Wednesday January 23rd, 2014.  Please 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 a few years ago and learn all about this important and reverent day.  

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

Last year I posted this on my blog.  I am is such a great story and I want to retell it each year.

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! 

Wednesday, October 23, 2013

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. 

Sunday, September 8, 2013

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

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."

Sunday, August 18, 2013

..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.