Tag Archives: acquired disability

June 23, 2018

Don’t miss out! RETAIN grants are a big opportunity

RETAIN is a five year and $100 million Federal Grant program that state agencies must nominally lead.  However, the leadership team must be multi-stakeholder and include an organization that actually delivers hands-on medical care.  Moreover, the states will probably end up contracting for delivery of the many services by individuals or organizations in the private sector. Proposals are due in ONE MONTH – so if you’re tempted to get involved, join our list-serv now and learn what you need to do!  See more below.

RETAIN is the biggest opportunity for physicians who practice occupational medicine since the 1970’s — when NIOSH and OSHA were established. It’s also a huge opportunity for other professionals with expertise in preventing needless work disability during the early phase of the stay-at-work/return-to-work (SAW/RTW) process:  the first few weeks and months of an injury/illness episode.

RETAIN requires states to get involved VERY EARLY in new injury and illness episodes among workers they haven’t had on their radar — and arrange provision of several kinds of services with which these agencies have had little/no familiarity. Most of the state agencies that received the RFP (and must lead RETAIN in their state) have been confused and caught flat-footed by it. They really need professionals with expertise at the interface between healthcare and the workplace to pitch in at several levels:

– to help NOW with project design and proposal writing
– once the project launches, to help oversee, manage and tweak the project at the top level,
– in individual cases, to deliver specific services during the first weeks and months of work interruption. (In fact, eligibility for RETAIN program services ends after 6 months of work absence.)

I’ve set up a free list-serv for everyone who is interested in the possibility of getting involved with their state’s RETAIN project. My personal goal is to help as many states as possible to recruit appropriate leadership teams and write successful bids. The project is so unusual, I don’t think there will be many. The Feds plan to accept EIGHT bids (from eight states).

JOIN US — if you’re an occ doc or SAW/RTW professional who is willing to wade in, introduce yourself to strangers, and then join the small team that will be developing your state’s overall project design and writing its proposal (bid) between now and July 23. Once you join the list-serv, go to our website and read the small number of earlier and information-filled emails that will get you oriented and on the right track. You’ll find links to the RFP itself along with many other resources.

To join the RETAINers list-serv, go to https://groups.io/g/RETAINers and click on JOIN THIS GROUP

NOTE: Think big.  This is the beginning of an effort to knit together some holes in our social fabric to meet the needs of people who have been falling through the cracks.  The Feds are looking for proposals that will help workers with new health problems — regardless of what caused them.  The point is to help ANY worker for whom a new health condition is causing work interruption and, if the right things fail to happen, could threaten their job. Needlessly losing one’s livelihood and ending up on SSDI is a very poor outcome of a health condition — ESPECIALLY when it didn’t need to happen.

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May 22, 2018

If you’re interested in RETAIN, let ODEP know today!!

Please be a bumble bee and pass along this pollen information to your contacts at the large healthcare delivery organizations in your area/state that have an outside-facing occupational medicine department. This email is about a strategic opportunity for any occ med program that can also benefit the larger organization in which it sits – as well as hundreds or thousands of newly-injured/ill workers and their employers in their area!  It is a VERY TIME SENSITIVE opportunity, so if you know an organization to whom this might appeal, take action right away.

Any party with a potential interest in some aspect of the RETAIN demonstration projects described below needs to send an email to the Office of Disability Employment Policy (ODEP) in the US Department of Labor. The email address is SAW-RTW@dol.gov, and the phone number is (202) 693-7880. Tell ODEP you want to be put on the mailing list for the RFP (request for proposals) for RETAIN. It is expected to be released in the next week or so, and the deadline for responses will be short — because the money must actually be awarded by the end of September.

There is $67 million dollars in the Federal budget for RETAIN, which will be a five year project. In order for RETAIN to be successful, each state agency that is awarded the money (and will dispense it) will have to contract with – and develop a real working relationship/operational partnership with — one or more entities in the healthcare delivery sector. In Phase 1, the project budget will be roughly $2 million, and in Phase 2, roughly $18 million for each state that participates in the project. The Feds are hoping to award money to EIGHT states for Phase 1, and to FOUR states for Phase 2 – based on their success at getting themselves in position to deliver a successful demonstration.

A healthcare delivery organization you know might be an IDEAL setting for the new organization that will play a central role in the demonstration project. In Washington state, where this model was originally developed, tested, and proved successful, these new organizations are called Centers of Occupational Health & Education or COHEs. The purpose of these demonstration projects is to test a model of COHE-driven early intervention that delivers some simple and proven best practices known to help working people keep their jobs during recovery from an illness or injury that has recently disrupted their ability to work. The ultimate purpose is to reduce the number of rare and unusually poor outcomes: job loss with subsequent entry onto publicly-funded disability programs, especially Social Security Disability Insurance (SSDI). Studies have shown that the COHE program in Washington has improved almost every possible medical, claim, and employment outcome, including reducing inflow onto permanent disability programs by more than 25%.

I hope you will see the opportunity that RETAIN offers a local healthcare delivery system: to establish their organization as a highly visible and forward-thinking leader in occupational health – one that goes beyond delivering effective medical care for work-related injuries by ALSO minimizing some specific adverse secondary consequences of injuries and illnesses that today worsen outcomes and jeopardize too many working people’s lives and livelihoods! …..iIncluding (potentially) working people with non-occupational injuries and illnesses. More employers and workers are likely to choose to use an organization that enhances its services and thus its reputation for practical usefulness in this way.

A very brief description of RETAIN appears on page 6-7 of a Pre-Announcement of Upcoming Competitive Funding Opportunities which forecasts the release of several RFP’s (requests for proposals). I’ve also pasted the text about RETAIN from the Pre-Announcement below.

I’d LOVE to see YOUR state be one of the bidders, be selected, and then execute a resoundingly successful demonstration of this intervention model – because I see the need for it so clearly and trust the solid evidence that underpins it. You may already be aware that, as part of a Capitol Hill initiative to generate ideas for protecting SSDI, I led the development of a policy proposal that served as a source for this project. I was thrilled to tears when I got the phone call telling me it had become a Federal budget item, and have been following its evolution ever since. I am well known among some key players at the Federal level, since I was a member of the Stay-at-Work/Return-to-Work Collaborative sponsored by the Office of Disability Employment Policy (ODEP) at the US Department of Labor. ODEP will be administering/ overseeing the RETAIN demonstration project.

I can send you more detailed information now about the probable design of RETAIN if you’re interested. TIME IS OF THE ESSENCE if there’s ANY chance you or your colleagues or other organizations in your professional network or community might want to play. Send an email to the Office of Disability Employment Policy (ODEP) in the US Department of Labor at SAW-RTW@dol.gov, or call them at (202) 693-7880. Tell ODEP you want to be put on the mailing list for the RFP for the RETAIN demonstration projects.

And of course, if you’d like to toss around some ideas or I can help you in any way, give a shout.

US Department of Labor – Employment and Training Administration (ETA)
Upcoming ETA Competitive Funding Opportunities
Excerpt from pages 6-7

RETAIN Demonstration Projects ~ $63 million
Anticipated Publication: Summer 2018
Awards Made: Fall 2018

The Office of Disability Employment Policy (ODEP), in collaboration with the ETA  [US Dept of Labor’s Employment and Training Administration] and the Social Security Administration plan to award approximately $55,000,000 to $63,000,000 in cooperative agreement funds to plan and conduct pilot demonstration projects called RETAIN – Retaining Employment and Talent after Injury/Illness. RETAIN demonstrations will test the impact of early intervention projects on stay-at-work/return-to-work (SAW/RTW) outcomes. Central to these projects is the early coordination of health care and employment-related supports and services to help injured or ill workers remain in the workforce. To accomplish this, successful applicants will provide services through an integrated network of partners that include close collaboration between state and/or local workforce development entities, health care systems and/or health care provider networks, and other partners as appropriate.

The RETAIN Demonstration will be structured and funded in two phases. The initial period of performance (Phase 1) will be 18 months and will include planning and start-up activities, including the launch of a small pilot demonstration no later than month nine. We expect to provide approximately $2,166,000 each to an estimated six state workforce agencies in the form of cooperative agreements for Phase 1. At the conclusion of the initial period of performance, a subset of up to three Phase 1 awardees will be competitively awarded supplemental funding of up to $18,600,000 to implement the demonstration projects during Phase 2. Awardees will be required to participate in an evaluation, which will be designed in Phase 1 and conducted during Phase 2 by an external, independent contractor.

The following organizations are eligible to apply:
• State Departments of Labor, State Workforce Development Agencies, or an equivalent entity with responsibility for labor, employment, and/or workforce development; and
• Entities described in section 166(c) of WIOA relating to Indian and Native American programs. These entities include Indian tribes, tribal organizations, Alaska Native entities, Indian-controlled organizations serving Indians, or Native Hawaiian organizations. These applicants are not required to partner with Local Workforce Development Boards (LWDBs).

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January 5, 2017

Why Public-Private Collaboration Is Necessary to Prevent Work Disability

My goal now is to raise awareness about the need for concerted governmental, philanthropic, and private sector action to find better ways to support the millions of workers who lose their livelihoods each year due to injury or illness.  In many cases, this outcome could have been prevented.  And in the New World under President Trump, it will probably be more important than ever to make sure that people get the help they need to KEEP earning a living and STAY in the workforce.

You may be wondering … why work disability is a problem?  Let’s start with the basics. As a practical matter, we already know that lack of work is bad for people and for communities.  Just think about the many millions of dollars the government spends to create jobs and reduce unemployment!  But now, formal research has started confirming how harmful worklessness really is for adults — documenting the consequences for their physical and mental health as well as for their marital, family, social and economic well-being.

Since that’s so obvious…. let’s agree that preserving people’s ability to function and work should be a fundamental purpose of health care services.  Successfully doing so should be seen as an especially valuable health care outcome, second only to preserving life, limb, and essential bodily functions.  And the failure to do so should be called a poor outcome.

Today’s reality is … that whether or not a person with an newly-acquired medical condition is able to function and work afterwards is not even counted as a health outcome!  And there are gaps in our social fabric that are actually creating job loss and work disability.

Here’s one big example of a gap: … None of the three professionals typically responding to workers who are dealing with life disruption due to injury or illness feel any responsibility for actively supporting the workers to keep their jobs or find new ones if necessary. That includes health care professionals, employers, and benefits administrators.  Occasionally, some of these professionals actually advise against work — not realizing the consequences, of course.  The workers are left to fend for themselves;  some lack the confidence or skills to do so successfully.  We need better public policy, stronger governmental efforts, and more support from the private sector in order to prevent this needless work disability.

Do you realize… that roughly half of the people now receiving Social Security Disability Insurance (SSDI) and other prolonged disability benefits started out with very common health problems like back pain, depression, and anxiety?  And do you realize that the vast majority of people in the country who develop those same conditions don’t even take any time off work or are able to return after just a short absence?   So the people who end up on SSDI are members of a subgroup that has had unexpectedly poor outcomes — including job loss.

You might ask …why does this sub-group have such poor outcomes of conditions that normally don’t cause much work disability at all?  It’s logical to assume that these people had the most severe cases of back pain or depression and so on, but in most cases there’s actually no objective data to support that idea.  For every person now on long-term disability there are others who started out with the exact same condition, but are still working.  From the strictly medical point of view, they looked identical at the beginning.  What is different is the way the illness episode unfolded in the two groups:  what happened; how others talked to them and treated them; the decisions they made about the best way to manage this life challenge; the effectiveness of the medical treatment they received; the other kinds of support they got and the opportunities that were or weren’t available.

My personal hope is that … more employed people who are dealing with new injuries or illnesses are going to get what they need at the right time to avoid needless impairment work absence, job loss, withdrawal from the work force, and long-term reliance on disability benefits — which really means a life of poverty.  That would be good for them, for the tax payers, and for our society as a whole.

Now that these issues are in the spotlight …. It is time for policy makers, employers, healthcare providers, health and disability insurers, other service providers, and affected individuals to start talking together about solutions — and then do their part to make those things happen.

For the last three years, Mathematica‘s policy researchers Yoni Ben Shalom, David Stapleton, and I have been collaborating in the SAW/RTW Collaborative sponsored by the Office of Disability Employment Policy in the US Department of Labor.  On September 13, 2016, Mathematica held a forum and webinar during which several speakers presented some actionable policy options that can improve outcomes and prevent needless work disability.

If you want to go deeper … Read my short Work Disability Prevention Manifesto by downloading it from the “Current favorites I’m Sharing” section on my blog homepage.  Or you can look at / listen to the recording of the SAW/RTW Collaborative’s September 13 forum/webinar..  Some of the ideas presented by the policy researchers came from surprising angles — and were quite creative / innovative!

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October 31, 2016

Social Security Administration seeks input from YOU

I hope you will read — and respond — to this Request for Information issued by the U.S. Social Security Administration.  SSA is looking for input in order to decide whether to undertake a demonstration project (at the community level) for early intervention in musculoskeletal (MSK) conditions – in the first few weeks (<12) after onset of work disruption.

I’m sure SSA will really pay attention to thoughtful input they get from “front line” professionals and researchers / practitioners with expertise in this field — and from patients who have personal experience with the gaps and holes in our systems today that push them towards disability and job loss.

SSA will ONLY proceed with this demonstration project idea if they think it WILL decrease job loss, workforce withdrawal, and eventual applications for SSDI — by reducing needless impairment and disability while preserving livelihoods among the workers.   At this stage, SSA is asking basic questions about the level of evidence supporting the efficacy of early intervention, what the interventions should consist of, as well as the wisdom, practicalities, and potential efficacy of such an effort.

The deadline for responses is November 18.   There is a real possibility this demonstration will actually happen.  The President’s proposed 2017 budget has $200 million allocated for demonstration projects by SSA.    Whether or not that money will ever actually be appropriated will depend on many factors, including which candidate is elected President and the composition of the Congress.

While I was scanning the RFI to find the response date, I was stunned and delighted to see my name listed in one of the 3 references cited at the end!  SSA listed the concept proposal for a Community-Focused Health & Work Service that Tom Wickizer, Kim Burton and I contributed to the SSDI Solutions Initiative sponsored by the Committee for a Responsible Federal Budget.  All of the proposals, including ours, are available here: SSDI Solutions: Ideas to Strengthen the Social Security Disability Insurance Program .Maybe our work has actually made some difference – at the very least, SSA is now interested enough to seriously explore our ideas!

Now it’s YOUR turn to make a difference — by reading and responding to SSA’s RFI.

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September 9, 2016

Pithy 4-min Video & 1-page Manifesto for you to use

Mathematica just released a 4-minute video of me pointing out why the work disability prevention model is important — in plain language.  The video was made at the request of the US Department of Labor’s Office of Disability Employment Policy (ODEP).  The main messages in the video are:

  1. MILLIONS of Americans lose their jobs every year due to injury and illness;
  2. Worklessness and job loss have been shown to harm physical and mental health as well as personal, family, social, and economic well-being;
  3. Worklessness and job loss should therefore be considered poor healthcare outcomes;
  4. Unexpectedly poor outcomes can often be prevented and there is good research evidence about how to do that;
  5. Changes need to be made so that vulnerable people get what they need at the time when they need it — and as a result are able to have the best possible life outcome, stay in the workforce, and keep earning their own living.

In addition, the video also explains WHY and HOW some people have unexpectedly poor outcomes of conditions that do not normally cause significant work disruption and job loss.  Unless you’re in my line of work, it is hard to understand why things turn out badly in some cases and not in others — especially if they looked exactly the same at the beginning.

The video is loosely based on a one-page Work Disability Prevention Manifesto I wrote.  I put a draft of it on this blog last spring and got many useful comments.  After many revision cycles, it is now as succinct and compelling as I know how to make it.  ODEP had no hand in the Manifesto; it’s my independent work.

I’m glad I can now share these two items with you because the WORLD needs to know more about these issues—and most PEOPLE in the world have a very short attention span and no interest in the topic to begin with.   I hope you will pass this stuff along to the people whose thinking you want to change or whose buy in you need. Then maybe THEY will pass it along to others as well.  Social norms ONLY SHIFT when people share powerful mind-opening ideas with one another.

Lastly, let’s all stop speaking ABOUT these problems.  It is time for us all to start speaking FOR action and FOR changes.

WORK DISABILITY PREVENTION MANIFESTO
©Jennifer Christian, MD, MPH August 2016

Preventable job loss demands our attention

  • Millions of American workers lose their jobs each year due to injury, illness or a change in a chronic condition.
  • Preserving people’s ability to function and participate fully in everyday human affairs, including work, is a valuable health care outcome, second only to preserving life, limb, and essential bodily functions.
  • A new medical problem that simultaneously threatens one’s ability to earn a living creates a life crisis that must be addressed rapidly and wisely. Most people are unprepared for this double-headed predicament. It can overwhelm their coping abilities.
  • When medical conditions occur or worsen, especially common ones, most people are able to stay at or return to work without difficulty. However, many prolonged work disability cases covered by private- and public-sector benefits programs began as very common health problems (for example, musculoskeletal pain, depression, and anxiety) but had unexpectedly poor outcomes including job loss.
  • Loss of livelihood due to medical problems is a poor health outcome. Worklessness is harmful to people’s health, as well as to their family, social, and economic well-being.

Why do such poor outcomes occur?

  • Medical conditions by themselves rarely require prolonged work absence, but it can look that way. Both treatment and time off work are sometimes considered benefits to be maximized, rather than tools to be used judiciously.
  • Professionals typically involved in these situations (health care providers, employers, and benefits administrators) do not feel responsible for avoiding job loss.
  • Unexpectedly poor outcomes are frequently due to a mix of medical and nonmedical factors. Diagnosed conditions are inappropriately treated; others (especially psychiatric conditions) are unacknowledged and untreated. The employer, medical office, and insurance company (if there is one) operate in isolation, with little incentive to collaborate.
  • Without the support of a team focused on helping them get their lives back on track, people can get lost in the health care and benefits systems. With every passing day away from work, the odds worsen that they will ever return. After a while, they start to redefine themselves as too sick or disabled to work.
  • When people lose their jobs and do not find new ones, they barely get by on disability benefits and are vulnerable to other detrimental effects.

How can we fix this problem?

  • Good scientific evidence exists about how unexpectedly poor outcomes are created, how to avoid them, and how health care and other services can protect jobs.
  • Health-related work disruption should be viewed as a life emergency. Productive activity should be a part of treatment regimens.
  • When work disruption begins, it can be both effective and cost-beneficial to have a coordinator help the individual, treating physician, and employer communicate and focus everyone’s attention on maximizing recovery, restoring function, accommodating irreversible losses, and making plans for how the individual can keep working, return to work, or quickly find a more appropriate job.
  • We must urgently establish accountability for work disability and job loss in our workforce, health care, and disability benefits systems and build nationwide capacity to consistently deliver services—just in time, when needed—that help people stay at work or return to work.
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July 28, 2016

Video on tools & techniques to aid recovery & RTW

You may like watching the video of a group discussion on Tools to Aid Recovery and Return to Work that was presented (and recorded) via Blab yesterday.  It was a stimulating exchange of ideas about both tools AND techniques with my colleagues Les Kertay, PhD and Chris Brigham, MD — as we each sat in our own offices.  Each of us were visible in our own little boxes on the screen.

The session was aimed at professionals in any discipline who want to hone their skills at working with individuals who are having trouble getting back on their feet.  It was sponsored by R3 Continuum and hosted by John Cloonan, their Marketing Director.

The video is now available on You Tube.  There are a few static-y and jumpy spots in the video, but I believe you will find the 60 minute conversation is worth your time.
Here’s the link to the YouTube version:  https://www.youtube.com/watch?v=jAwJFMD0hBo

Afterwards I talked to John Cloonan about Blab.  Apparently it has a built-in link to Twitter, so Twitter users can watch the live Blab video using Twitter’s Periscope capabilities.  Comments from Twitter users are fed to the Blab screen and are visible to presenters, which enables audience participation.  In addition, John was able to simultaneously link the live video to Facebook.   So while we were talking among ourselves, an unknown number of people were watching our discussion via R3 Continuum’s website, Facebook AND Twitter.   If you go any of those places, you can still find it.

Wow, talk about the ability to extend one’s reach and connect with many audiences!   Looks like John Cloonan (as a marketing guy who wants to disseminate messages far and wide) is drawn to Blab because it is possible to attach such a big social media megaphone to it!

As is typical with new technology, there are more challenges than are obvious at first glance.  For example, Blab works much better with a high-speed wired connection.  Some users may find their firewall is blocking it and have to figure out how to unblock it, etc. etc.  I had to restart my silly computer to get the microphone to work.  So having a “tech rehearsal” ahead of time was absolutely essential.

Les, Chris and I are all members of the Praxis Partners Consortium, by the way.

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June 9, 2016

Interview with Val Lougheed about recovery and her book Be Still

I recently asked Val Lougheed some questions about her book Be Still and her experience recovering from major trauma.  I have summarized our dialogue for you below.

At the time of the head-on automobile collision that nearly cost her life in 2003, Val was the owner and president of a successful rehabilitation company then called Northern Lights Canada, with a large staff in Ontario.  The accident caused a significant head injury, internal injuries, and multiple broken bones. She made a remarkable recovery and was left with subtle limitations. If you want to see Val in action, here’s a brief 4 minute YouTube video of her speaking at a conference. She was able to return to her company, and then found a new calling as a speaker and author on head injury and recovery.   Her book Be Still is a very personal set of vignettes from her hospitalization, her recovery and rehabilitation — and her reinvention of herself.

Val and I met in person a few years ago.  She has been a longtime valued contributor to the multi-disciplinary Work Fitness & Disability Roundtable email discussion group I run.  I recently read Be Still and recommend it to you.  Her book offers a very personal glimpse into the inner experience and outer realities of someone bound and determined to heal from devastating injuries.  She has been working on a second book to be released later this year.

DR J:     Why and when did you decide to write your book, Be Still?
VAL:      It was serendipity.  At the time of my accident, I had almost finished a Master’s Degree in Community Rehabilitation and Disability Studies at the University of Calgary. My advisor knew I had kept a journal while I was in the hospitals, and suggested that I write a narrative about my recovery for my thesis. She encouraged me to write only about my personal experience – no research, no literature references, no nothing. She said to write it so that when someone read it they would feel like they were going through the experience with me. As I analyzed my journals, the particular themes that stood out were trauma, pain, depression, acquired brain injury, narcotic pain killers, and methods of helping. Writing that paper was sort of like an exercise in do-it-yourself narrative therapy. I believe it augmented my recovery. And then I realized I could self-publish it as a book.

DR J:  What did you want your book to accomplish?
VAL:     I wrote it in hopes that it would provide some useful insights into the following questions:
1.    What does it mean to recover?
2.    What can I do, myself, to recover and return to a life that includes work?
3.    What can we do — as practitioners, as family, as friends — to aid recovery and  return to work?

I have realized that the meaning of my accident for me comes from writing, studying and speaking about recovery. So every time I speak, I feel like I owe my life to the people who are listening. Every time someone reads my book, it’s the same – I owe my life to them. To my complete delight, people respond to my talks with the same amount of passion (and tears) that I have in giving them. I am driven by the hope that my work can, in some small way, lead to the development of a more sensitive, effective and in-tune system within which practitioners and patients/clients can work together to achieve successful returns to life and work.

DR J:   You have some very personal experiences to share with us — but before we go there, do you have any advice for people now trying to recover in the “system”?
VAL:     Of course!  Here are my six best suggestions.

  1. Play your own game. Don’t fall into the trap of believing you are disabled and can’t work, or that you don’t want to work/be functional.
  2. Be curious about your recovery. Try to learn and understand everything about all aspects of your recovery. Read, talk to people, write a journal – whatever you like to do. This helps to put the ‘problems’ outside of you so you can look at them with some distance between you and them. This helps to preserve your inner self from being consumed by your problems.
  3. Functionality is everything. Be clear about what a functional life for you looks like, and work towards that. Don’t get sidetracked with standardized measurements and pronouncements, or with the need to prove that you are disabled. For sure, do whatever you have to do to get the money and help you need to recover — and play the game if necessary. But always continue working towards your own vision of personal functionality.
  4. Get good psychological help. If you can afford it, or convince the insurer to pay for it, find a good psychologist or counsellor who can support you in your efforts to recover. My preference is narrative therapy, for a couple of reasons. First of all, it helps you to separate yourself from your impairments/illnesses/problems and work on them from a distance, so that you don’t drown in them. Secondly, it helps you to re-story yourself and your life, which is so important when you are going through a ‘re-organization of self’.
  5. Look for ‘angels’. There are some people out there who are truly angels. They are the ones who are prepared to listen to you, respect you, understand you and even love you. If you find one, spend time with them, listen to them, and let them help you.
  6. Stand up for what you know you need. You will be called all sorts of names (malingerer, non-compliant, unmotivated, etc, etc). Do not listen to this. Be clear about what you need and then search out people who can help you in this regard.
  7. Never, ever, ever give up!

DR J:   What have you learned about how recovery really happens?
VAL:    I know now how recovery happens on different levels. There is the outside recovery – the physical aspect of it. That part can be measured, quantified and standardized (e.g., how long does it take a broken collar bone to heal and what will it look like?). Healthcare professionals assess and fix this kind of stuff.

But then there is the inside recovery, which I found to be a deeply personal experience. In reality, there is no difference between the physiological and the psychological – no split between the mind and the body. The combined whole person can’t be standardized, measured, quantified or partitioned (which is very frustrating for a disability benefits system based on those things).

Shortly after I woke up after the accident I realized that I had lost myself. By ‘myself’ I mean my spirit, my soul, my energy – whatever it was inside of me that was ‘me’ was gone. I realized that I was becoming someone else, but I had no control over the process. Very scary – like all of a sudden not knowing who or where you are….like floating with no ground under you and no net to catch you. In clinical terms, I would call it an ‘existential crisis’.

In Judith Herman’s excellent book, Trauma and Recovery, she contends traumatic life events can shatter the sense of self.   Since an event is traumatic if the involved person perceives it to be traumatic, there must a lot of people out there with shattered selves!  And typically, it’s not exclusively the doctors and other healthcare professionals who help put the inner person back together – it might be social workers, friends, family, a minister, a nun, or maybe even just a comment from a person in passing.

Beyond this, a good recovery requires an alignment of the stars so to speak, in terms of the presence of positive family and social support along with other facilitating factors (a safe place to live, relatively good general physical and mental health, enough money to manage, and so on) to realize progress.

DR J:   How did the knitting back together of Val, the whole person occur?
VAL:     Here’s one little story:  About four months after the accident, I was talking to Sister Brenda, a nun at St. John’s Rehab Hospital in Toronto where I was a patient.  I shared with her my sense of loss of self.  By virtue of her amazing listening and empathy skills, I suddenly found myself.  My “me” was all rolled up in a little ball in my stomach!  I thought back to the accident, and suddenly it made sense to me why that was where it was.  As the other car approached, I must have realized that I was not going to be able to escape a collision — so the me that is ‘me’ hid away. As soon as I found where “me” was, I knew that was the start of true recovery.  I believe this experience of a ‘split’ between the mind and the body is the result of trauma.

Coming back to life required major internal change, a re-organization of myself on a grand scale. It required me to have a strong sense of personal control, personal power, and raw courage to follow through with necessary (and often painful) treatments and rehabilitation activities.I needed to be around people an practitioners who could help me with these things.  In his amazing book, The Upside of Down Thomas Homer-Dixon describes the process of ‘”coming back” as a “novel and unpredictable recombination of elements”.  That is exactly what it felt like for me.

Jon Kabat-Zinn has my favourite definition of what rehabilitation is really all about. He says that “rehabilitation is the learning to live inside not only one’s body, however it is after an injury or illness, but inside one’s very being”.  That quote really resonates with me.

DR J:   Who and what helped or hindered your rehabilitation?
VAL:     When I think of who helped me most to come back to life, there was of course a literal village of wonderful doctors, nurses, physios, OT’s, psychologists, etc. etc. who helped put my body and my head back together.  But specific people and particular moments — both bad and good — stand out in my mind.

I felt very vulnerable all the time during my recovery – physically obviously, but also emotionally. I felt that anyone could hurt me so easily that it was very hard to trust anybody.  This issue of trust is a huge one, in my opinion, in terms of facilitating recovery. If I trusted someone, I loved them and would try my hardest to do whatever they asked. If I did not trust someone, I hated them because I felt like my life was being threatened by them, and I would do whatever I could to get away from them. This led me to define what trust meant for me…..

I trust (love, feel safe with, will try hard for) people who:
•    Listen to me
•    Understand me
•    Respect me
•    Are competent.

In terms of being a client in the disability benefits system, when trust, positive regard, respect, and so on were absent, I could sense it – like an animal instinct. If someone treated me like this, I would feel threatened, and become REALLY uncooperative (I couldn’t help myself!), and do everything in my power to get away from that person. This is a good example of what’s called avoidance behaviour in the world of neuroscience (Rock, 2008).  I think it is often mis-labeled as non-compliant, malingering, unmotivated, etc. etc. in the system.

When my personal experience of impairment was not taken into consideration, when my recovery was measured against published norms that did not reflect exactly where I was in time and space, when I was not trusted, when I was not understood or respected, I not only lost my physical and cognitive ability to function, I also lost my will to recover.

But on the other hand – I definitely needed the money that I got from the insurance company to support me and to pay for necessary therapies when I could not work. And of course, in order to secure such monies, I had to continually prove that I was still disabled, with on-going health care assessments.

But frankly, it’s hard to recover when you are having to prove you are disabled in order to get help. It casts you in a crazy world of damned if you are recovering (because then you lose your benefits) and damned if you aren’t (because then you lose your functional life). The contentious, confrontational and distrustful atmosphere within which this plays out only serves to make it all so very much worse.  This is the reality of the disability paradox that plagues the current system adn that is what I’m researching and writing about now.

DR J:   Thank you, Val Lougheed, for sharing your personal experience of a difficult but successful recovery with us.
VAL:     Thank you for the opportunity.

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May 18, 2016

It’s time to establish accountability for job loss

My report on Establishing Accountability to Reduce Job Loss After Injury or Illness (commissioned by the US Department of Labor’s Office of Disability Employment Policy) was originally conceived as a simple effort to lay out the rationale for adding work and participation in life to the list of positive health outcomes.  (I suspect that I was asked to write it because they thought a physician like me would focus on medical practitioners and the healthcare delivery system.)

Almost immediately, it became obvious to me that in order to make a solid contribution to the on-going public dialogue about health outcomes, the paper would have to explore the meaty issues of explicit expectations, accountability, metrics, credible data, rewards for best practices, and incentives for both participation and performance.

Soon after that, the absurdity of discussing expectations and accountability for the healthcare system alone became obvious —because organizations in other sectors of society play a role in the SAW/RTW process, each of which has enough discretionary power to support or thwart it.

Thus, over time, the purpose of the paper shifted to answering this question:  What has to happen in order to engage the professionals at the front-line  — the ones who work directly with affected individuals and make discretionary decisions about how much effort to make and for what purpose — so they start making a real effort to help people stay employed?

Who are those front-line professionals?

(1) Healthcare professionals.  Most of us view our purpose as making accurate diagnoses and providing appropriate treatment.   We are generally not trained to assess work capacity and prevent work disability.  Yet our opinions about work have considerable weight under law, regulations, insurance policies and traditional business practices.  We generally don’t spend much time and energy thinking about issues outside the exam room.

(2) Workplace supervisors or HR professionals.  Their focus is the business of the organization, producing its goods or delivering its services,as well as abiding by company policies and applicable laws. They can decide how much effort to make to help the employee stay at work and keep their job.  With rare exceptions, they are neither aware of the preventable nature of most work disability, nor are they trained how to negotiate and arrange stay at work or return to work plans, identify alternative temporary tasks or reasonable accommodations.  And they are not incentivized to do so.

(3) Claims/benefits administrators.  Their focus is administering the benefit programs correctly, establishing eligibility, compensability, meeting deadlines, making payments, and other requirements. In between these duties, they decide how much effort to make to help the beneficiary/claimant. Like the workplace professionals, with only rare exceptions, they are neither aware of the preventable nature of most work disability, nor are they trained how to negotiate and arrange stay at work or return to work plans, identify alternative temporary tasks or reasonable accommodations.  And they are not incentivized to do so.

Job loss is the third worst outcome of an injury or illness

As I thought about these players and those who influence their behavior, the biggest realization dawned more slowly:  job loss is a potentially devastating secondary consequence of a health-related employment disruption or a failed SAW/RTW process — because it often leads to permanent withdrawal from the workforce.  In fact it is the third worst outcome of a health condition, the other two being death and loss of limb or core functions like sight and hearing.

Yet we have not seen it that way.  Unlike death and serious injury, job loss is generally not noticed.  It’s actually a hidden outcome.  The frequency with which it occurs can only be estimated indirectly — because it is untracked and thus invisible.  When someone loses their job due to long-lasting illness or injury, they often end up leaving leave the workforce permanently, becoming dependent on public benefits programs like SSDI.

Some years ago, a senior Social Security Administration official commented to me that SSDI is the largest insurance fund IN THE WORLD and yet it has no risk management program, no loss prevention program.  Private sector insurance companies view these as core functions of their organizations.  They know they must identify and take steps to reduce risks and mitigate losses in order to meet their responsibilities and stay solvent.

In my view, government should be likewise obligated to take steps to protect SSDI (and the taxpayers who fund it) from the economic consequences of the dysfunctions, inadequacies and gaps in the upstream social structures and programs — because their failures end up on public benefit programs.

Government will make a major contribution to reducing demand on SSDI by:
(1) establishing policy that job loss/withdrawal from the workforce is a very unfortunate outcome of a health problem and should be avoided whenever possible,
(2) enabling all parties to see more clearly when it happens by requiring reporting of these events; and
(3) establishing consequences of some sort when involved organizations are non-responsive (negative incentives such as financial penalties, loss of privileges, or public exposure) or do take appropriate action (positive incentives such as credits, privileges, or favorable publicity).

This combination of outcomes visibility and accountability should then start to shift how parties in the private marketplace choose vendors and suppliers.

How will things look different when there IS real accountability for job loss?  

Implementing the broad range of actions recommended in the Establishing Accountability report will require a significant long-term effort because of their comprehensive, complex, and varied nature.  Taken as a whole, these actions have the potential to create truly transformational change.

Success will mean that more workers living with adult-onset chronic conditions and impairments (acquired disabilities) will be able to stay fully and productively engaged in their own personal, family, and community life; protect their household’s standard of living; remain economically self-sufficient contributors to their local area economy; and avoid dependency on government programs—which will in turn protect their future health and well-being and improve their children’s future prospects.  At the national level, success has the potential to stem the tide of declining labor force participation, lighten taxpayer burdens, and bolster the nation’s social fabric and the vitality of the economy.  All in all, the initiatives proposed make good use of limited government resources.

The ultimate success of the initiative will hinge on the ability of Federal policy leaders and supporters to create and sustain real multi-stakeholder buy-in and enthusiasm for achieving the future vision described in the paper.   A good next step is for the federal and state governments to decide whether and where to start.  It will take time and effort to achieve consensus among key stakeholders that this kind of initiative is necessary, timely, and deserves priority for person-power and funding.  Once that preliminary groundwork is laid, more detailed planning work can get underway.

Whoever you are, I hope you read the Establishing Accountability paper and agree that change and action is needed.  If my suggested recommendations spur you on to creative thinking, you do NOT need to wait for the government to act.  You can start factoring these issues into your decisions about who to collaborate with now.

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May 11, 2016

Best & worst states for people with disabilities who want to work

Have you heard of RespectAbility?  When I went to their website, I found a COOL CHART showing some HOT NUMBERS:  the best and worst states for people with disabilities who want to work.

Before you look at the chart (I’ve pasted it below):
•    Guess which state has the highest employment rate for people with disabilities – 50.1%?   Do you think it’s a blue or a red state?
•    Guess which state has the lowest rate – 25.6%?   Is it blue or red?
•    Answer:  Almost all of the best AND the worst states for people with disabilities with regard to employment are in the red zone of the USA.

So, what else might be the reason for the differences between states?   Hmmmmmmmm. Is it the underlying health of the state’s economy?  I went to Mr. Google to find a ranked list of state economies.  This list on Business Insider was the first one I found.  Yay, here’s the answer, I thought (for a moment).   The WORST state for people with disabilities is the LAST state in the ranking – the state with the weakest economy over all (West Virginia).

BUT then I noticed that two other states among the bottom 10 of Business Insider’s list of state economies are in RespectAbility’s the TOP FIVE for employment of people with disabilities:  North Dakota and Wyoming.    And at the other end, of the 10 states that Business Insider ranked most economically healthy, only 1 was also in RespectAbility’s top group for people with disabilities (South Dakota).

I started to wonder whether Business Insider’s list was the “right” one, and found three other lists, here, here, and here — all of which purported to describe the health of state economies.  Each one has a VERY DIFFERENT RANKING of the states!!   The difference seems to be the method they used:   the underlying data sources and the formula used to calculate the results.

So I said uncle.  As an economic babe-in-the-woods who is unable to sort through this stuff, I have given up my extremely short amateur quest to understand WHY some states are better places to be if you have a disability and want to work!   For now, it is what it is, to use the jargon of today.

CLICK ON the table from RespectAbility pasted below and check out the numbers.  Then go to the full article on the RespectAbility website to read their analysis of why the numbers look the way they do – and what it all means.  And while you’re there, RespectAbility has also asked the current candidates for President of the USA to answer questions about their position on people with disabilities.  Their answers were NOT all the same!

Table-Best and worst states for disabled employment

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March 7, 2016

Manifesto – Preventing Needless Work Disability (DRAFT)

I’ve tried to squeeze all the main ideas of the work disability prevention (WDP) model into one page (see below). The model has matured over the last several years as key dynamics have become more apparent.  I’m curious to hear your reaction to this new version.

After promoting the WDP model in the private sector for a long time, I started introducing it to the Federal / State disability sector in 2011.  Now seems like the right time to get a compelling and very succinct document circulating so it gets in front of many more eyes  – for example, lots of eyes on Capitol Hill and in regulation-creating / law-making (sausage making) circles.

The members of the Work Fitness & Disability Roundtable are also helping me craft a 3 or 4 bullet “sound bite.”  However, in my view it will take more than that to get influencers and decision-makers to decide to explore these issues further. They need a quick summary of WHAT the problem is, WHY things look the way they do, and WHAT might be possible instead — but just a bit.  Thus, this one-pager.

I’m not yet clear what to do with this draft – other than to post it here and solicit your comments.   Am also hoping to get your ideas for the best organization to issue and disseminate a manifesto like this — so it has the maximum impact.  What are the chances of it going viral?  Please leave a comment below or email me your ideas and suggested revisions.

Work Disability Prevention Manifesto (DRAFT)

  • Preserving people’s ability to function and participate fully in everyday human affairs, including work, is a valuable health care outcome, second only to avoiding loss of life, limb, and essential bodily functions.
  • Loss of livelihood due to medical problems is a poor health outcome because worklessness is harmful to people’s health as well as their personal, family, social, and economic well-being.
  • A new medical problem that threatens the ability to continue earning a living is a big challenge – a life crisis that must be addressed. Most people are unprepared, never having faced this double-headed predicament before. It can overwhelm their coping abilities.
  • When medical conditions occur or worsen, especially common health problems, most people are able to stay at or return to work without difficulty because the right things tend to happen during the first few days or weeks.
  • However, many of the prolonged work disability cases in both private and public sector sickness programs, disability benefits, and workers’ compensation programs began as very common health problems (for example musculo-skeletal pain, depression, and anxiety) but had unusually poor outcomes.
  • Unusually poor outcomes are frequently due to the interplay of sub-optimal health care and non-medical factors. Without a team focused on helping them get their lives back on track, people can get lost in the healthcare and benefits systems. Remediable issues in the situation are overlooked and not addressed. Incentive alignment among the involved parties is poor.
  • Medical conditions by themselves rarely require prolonged work absence, but it can look that way. And with every passing day away from work, the odds are worsening that people will ever return to work. After a while, they start to see themselves as too disabled to work.
  • Unlucky people lose their job and do not find a new one. They leave the workforce and eke by on disability benefits, in poverty, and vulnerable to its detrimental effects.
  • Today, most professionals typically involved in these situations (healthcare professionals, employers, and benefits handlers) do not feel responsible for avoiding job loss.
  • Good scientific evidence exists about how unusually poor outcomes are created, how to avoid them, and the health care and other services that can optimize function and protect jobs.
  • When work disruption begins, it is both effective and cost-beneficial to have a coordinator assist the individual, their treating physician, and their employer with communications, as well as focus everyone’s attention on restoring function, accommodating irrevocable losses, and making plans for how to keep working, return to work, or quickly find a more appropriate job.
  • Urgent priority should be given to establishing accountability for work disability and job loss as well as building nationwide capacity to consistently deliver services that help people stay at work or return to work – just in time, when needed.
  • Helping more people with medical problems to keep their jobs or find new ones in a timely manner will benefit them and their families, and will benefit our society as a whole.

March 7, 2016

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