Author: John Wayne Barker

I spent months getting ready for this trip by gathering information about where I was going and learning everything I could about the RV; even writing a “RV for Dummies Manual” (RDM).  The day we left we had 7 “problems” with the RV that required my RDM, some troubleshooting, and spending the night parked in front of the Dawson, ND City Hall waiting for the gas station to open in the morning.  Lesson – Don’t get too comfortable, the “check engine” light just came on.
As the old saying goes “we are all alone in this together”.  Yet I met the following 26 wonderful people who made my odyssey immensely better:  Marty, Larry, Stacey, Keith & Trina, Dan & Laurie, Wayne & Nina; Marvin, Mur & Pat; Craig, Mike, Joe, Tom, Bert, Jeff, Mark & Lana, James, Ken, Tom & Jean, Shari, and Julia.  I hope I was as generous to them as they were to me.  Lesson – Do your best, be nice to those you meet, and enjoy the trip.
I bought the XM radio package figuring it would be better than regular radio and bringing along many CDs for the long drives.  Plus I would be able to pick-up the MN Twins games.  With all the channels, and thousands of songs across many genres, I didn’t expect to hear the same song twice.  Yet, on day 1 I heard “Back In the Black” by AC/DC on 2 different stations.  Lesson – You would be surprised at how many firsts are really just repeats.
Ross and I drove 8 hours in one day to make Bozeman and one day we fished for 8 hours to try and catch dinner.  Whether it is important (driving) or fun (fishing), don’t get too excited with the possibilities.  Lesson – Everything can only go so far.
One day it was really hot so we had the AC units on to cool down the RV.  Two hours later we needed the RV furnace to stay warm.  Lesson – Hot and cold are an example of how our experiences are just a change in the status quo.
The more stuff I’ve acquired over the years the less I’ve wanted to use things because of the effort and cost to clean, repair, or replace them.  Whereas Ross had no hesitation to use every function available in the RV.  This helped me to see that the RV worked and was easy to maintain.  Lesson – It is better to use your stuff and break it than to keep it ready for another day.
I had never parked an RV in a campground or hooked-up to the utilities (electric, water, and sewer).  So, when I pulled into my first campground I explained to the host that I was a rookie that might need some help.  He was only too happy to help and followed me to the parking stall to walk me through the steps.  He also provided some great local information on where to golf, directions to the local Ford RV Dealer, and where to go for fly fishing information.  Lesson – Stop, look, listen, and ask.
A mantra most of us have heard all our lives is to “stick with the plan”.  As a result, it seems we approach most situations in a defensive posture to minimize surprises instead of an inquisitive approach looking for and embracing change.  Today’s dynamic world is a lot like a long RV trip in that you have to adjust quickly.  Lesson – The best plans change.
I was fishing for a couple of hours on my own and caught a nice 2-3lb brown trout that I quickly named dinner.  I kept it in my net held at the bottom of the river bank until Ross joined me so that he could take a posed picture of me and the fish.  When he got there we did a high five and I knelt in the water with the fish in front of me for the picture.  The fish slipped out of my grasp into the river and was gone.  No picture, and worse yet, no dinner as we did not catch another fish that day.  Lesson – Posing can cost you the prize.
Daily activities are at best a distraction, and more likely avoidance, from the reality that few of us are really prepared to survive.  When you cut through the distractions we allow to clutter our days, the choices become clear:  faith in a god, an ideal, or a purpose larger than yourself; devotion to family and traditions; integrity and loyalty; having fun and keeping things simple.
Along the way I saw 43 notable animals including:  1 elk; 6 moose; 12 black bears; 7 grizzlies; 3 eagles, 6 loons, 1 osprey; 2 humpback whales; 2 wood bison; 1 stone mountain goat; and 2 stone mountain sheep.  I learned the following 9 Canadian sayings:  Eh; Right; Mydear; Tied-Up; Beauty; Blubbering A Bib Full; Chewing the Rag; Its all good; and Slippy.  Don’t be surprised if you hear me use them in a conversation.

The 49-day trip also helped me realize that I don’t feel as old as I look, happiness is real only when shared, and we are all traveling in a circle.  For some it is like a merry-go-round in that every day they travel in a very small circle.  For others it is more like a rollercoaster with a large loop, ups and downs, and twists and turns that seem new each ride.  Regardless we are all born, we live, and then we die.  Since that cannot be escaped, we need to break out of our circles and take time for those side trips, eat at different restaurants, try new activities, and talk with strangers.  You cannot imagine the adventures that await.

The book explains that where you identify discomfort you’ve found the place where leadership is needed and proclaims that today’s heretics are the new leaders because they are willing to challenge the status quo.  Whereas recent leaders were great at managing people, the new leaders create movements by empowering the Tribe to communicate as opposed to commanding people to follow them.  The new leader increases the effectiveness of the Tribe and its members by (i) transforming the shared interest into a passionate goal and desire for change; (ii) providing tools to allow members to tighten their communication; and (iii) leveraging the Tribe to allow it to grow and gain new members.  The movement happens when people talk to one another, when ideas spread within the Tribe, and most of all, when peer support leads people to do what they always knew was the right thing.  The book offers the following six principles to create movement:

Transparency really is your only option;
Your movement needs to be bigger than you;
Movements that grow, thrive;
Movements are made most clear when compared to the status quo or to movements that work to push the other direction;
Exclude outsiders, who isn’t part of your movement matters almost as much as who is; and
Tearing others down is never as helpful to a movement as building your followers up.
 

An important concept to embrace is that the only thing that makes people and organizations great is their willingness to be not great along the way.  The desire to fail on the way to reaching a bigger goal is the untold secret of success.  The message that really resonated with me was – “The secret of leadership is simple:  Do what you believe in.  Paint a picture of the future.  Go there.  People will follow”.  This is very comforting as I have had many moments when greatness was the antonym to describe my outcome and what I am attempting here is new to me.

Over the next two years the waivered service system in Minnesota will undergo dramatic reform.  To their credit, DHS is attempting to include stakeholders in multiple workgroups on topics such as NFLOC, Quality, Contracting, Rates, and much more.  As the MnDACA representative on both the Expert Panel and Rate Setting Methodologies Intensive workgroup, I have an obligation to engage the membership in these discussions.  I attempt to do this by providing a summary of each meeting, encouraging others to visit the official workgroup website, and bringing feedback from my constituency back to the workgroup.  To date this has not been very effective.

So, taking a lesson from the book, let me offer a goal that I hope other disability service stakeholders share and will inspire them to get connected:

We want system reform to be based on individual preferences and support a stable provider network so that people with disabilities have real choices.

We need a holistic approach that permits the individual to determine for themselves the support needed to have preferred housing, satisfactory work, reasonable transportation, and meaningful relationships.  To that end, I believe the decision makers need to minimize the system to simply determine recipient eligibility, assess service options, authorize providers, account for expenses, protect health & safety, and measure quality.  Nothing more and nothing less.  Unfortunately, it is quite possible that the system will become even more complex than it currently is with the current architects so deeply immersed that they cannot see the forest because of the trees.

I am willing to challenge the status quo, however, I am not capable of either doing it alone or by representing a group that lacks organization or unity.  I need to be connected to you in a way that creates movement and increases membership.  To this end, I am willing to develop and launch a blog site to connect anyone that wants to share their ideas on how to change the status quo of the MN disability service system; I just need to know you are there and interested.

So, if you are interested, drop an email to jwb@merrickinc.org with your contact information and I will add you to a distribution list.  If enough people express interest, I will proceed with the blog site and consider other ways to tighten communication so that we can talk to one another, share ideas, and offer peer support so that people do what they always knew was the right thing.  Together, we can make a positive difference in the lives of people with disabilities, realize our professional beliefs, and be good citizens.

I’m calling – is anyone listening?

While clients on work crews made 2 cents less an hour in 2009, clients working on-site and those hired by a business made 21 cents and $1.23 more an hour respectively.  There are 112 clients actively involved in self-advocacy groups, 2 clients completed the 8-month Partnership in Policymaking course offered by the Governor’s Council on DD, 1 client was chosen for the Senate Fellowship Internship Program, 51 clients presented their personal short-story with 19 legislators during the 2010 session, 1 client is serving on the Secretary of State’s Disability Workgroup, and 5 clients are working on 2010 election campaigns.

At this point we have done most everything we can to preserve the availability and quality of services and our future is truly in the hearts and hands of the citizenry.  For most of the past 50 years Minnesota took pride in its quality of life and citizens understood that it took both their involvement and taxes to nurture and sustain it.  This “social covenant” is now in jeopardy as politicians and people blame others and cut budgets instead of finding long-term solutions.  One of our company goals is to “Respond to and influence emerging community norms and expectations for people with developmental disabilities” and this year we plan to engage citizens in conversations about the benefits of having people with disabilities part of our communities and the return on investment for money spent on human service programs.

If this degradation of life in Minnesota is to be stopped, citizens will need to get involved in community improvement projects, model respectful behavior, lift others up, and insist on competent political leadership.  We have a great State that offers opportunities for a wonderful life to all citizens; let’s not sacrifice it because we want more so that others have less.  Its time to turn things around.

A parent himself of an adult daughter with a developmental disability, Dr. C. Ford Runge, Distinguished McKnight University Professor of Applied Economics and Law at the University of Minnesota, developed a case study using Merrick, Inc., the largest DT&H provider in Ramsey County and one of the first such programs established in Minnesota.  Dr. Runge sought to assess the return on the public’s investment and the overall benefit to the community of this human service program.

In his study, “The Stimulus Effects of Employment Programs for Minnesota’s Disabled Citizens:  A Case Study of Merrick, Inc. (October 20, 2010),” Dr. Runge concludes that the dividends of the public investment in DT&H programs extend well beyond the services provided to clients:

“Clients receive employment opportunities, wages, transportation, and supervision.  But there are other dividends:  wages to program staff; avoided costs of residential supervision; taxes paid by clients and staff; and state revenue from charitable gambling activities (most of which does not flow to the charitable gambling organization but to the state treasury).  In addition, many of these programs seek to leverage state support by seeking grants supplementing state taxpayer dollars.  Finally, the companies that employ people with disabilities through contracts with such programs do so both because of their civic concern and because it makes good business sense.  In sum, public investments in day service programs for people with developmental disabilities produces nearly $3.00 of economic benefit for every $1.00 spent.  These benefits actually help to reduce and offset the actual, unavoidable cost of the 24-hour long term care for persons with developmental disabilities.  Apart from any humanitarian concern for the less fortunate, government cuts to such programs are penny-wise and dollar-foolish.”

I encourage you to read the 8-page case study that can be found using the link embeded in this editorial and ask that you forward it to any policymaker, politician, media contact, or advocate you know.  As a society, we must continue to inform the public policy debate about the benefits of vocational and life enrichment services for persons with disabilities, the need for government funding of such programs, and the nearly 300% return that such investments yield.

By the way, we just posted a three minute video entitled “A Place In This World” that was produced by volunteers and captures some of what happens here at Merrick, Inc., on a daily basis. We have received great feedback from those that have viewed the video and many have posted a link to it on their profile page.

It would be nice to simply ignore these anonymous false prophets, however, professionals need to challenge their assertions until we are consistently listening and acting upon the goals and dreams of people with disabilities.  To that end, I found the “Values & Principals” offered in the memorandum to be very well stated and have included them here as printed.

1.   Disability is a natural part of the human experience that in no way diminishes the right of individuals with disabilities, including individuals with the most significant disabilities, to achieve the four goals of disability policy – equality of opportunity, full participation, independent living, and economic self-sufficiency.

2.   Self-determination and informed consumer choice are essential elements in all programs and service options.  Informed consumer choice means a voluntary, well-considered decision that an individual, or where legally required, the individual’s legal guardian, makes on the basis of appropriate options, information and understanding.  Self-determination means acting as the primary causal agent in one’s life, being able to make choices and decisions about one’s quality of life, free from undue and unwanted external influence.

3.   Work is physical or mental effort directed toward production of goods, the provision of services, or the accomplishment of a goal.

4.   Work for pay (employment) is a valued activity both for individuals and society.  Work provides both tangible and intangible benefits.  Work helps people achieve independence and economic self-sufficiency.  Work also gives people purpose, dignity, self-esteem, and a sense of accomplishment and pride.

5.   All individuals, including individuals with the most significant disabilities, should enjoy every opportunity to be employed in the workforce, pursue careers, advance professionally, and engage actively in the economic marketplace.

6.   Individuals with disabilities, including individuals with the most significant disabilities, should be empowered to attain the highest possible wage with benefits, consistent with their interests, strengths, priorities, abilities, and capabilities.

7.   Exploitation of workers with disabilities is illegal and abhorrent.  Workers should enjoy meaningful and effective protections against such exploitation.

8.   Input from all stakeholders, particularly program participants and their families and/or advocates, where appropriate, is critical in the design, implementation, and evaluation of home and community-based waiver programs.  Documentation of the process for and results from gathering input from stakeholders must be required by CMS for the submission of a state’s initial waiver application and for waiver renewals.

9.   Input from employers and knowledge of the marketplace is critical to effectively direct employment-related training and services.  Based on information from the employment marketplace, employment-related training services and supports should recognize that employers want to hire qualified individuals, including qualified individuals with disabilities (i.e., individuals who, with or without reasonable accommodations, can perform the essential functions of the job).

10. Employment-related training services and supports should be provided to assist individuals with the most significant disabilities who choose to pursue employment.  While a priority should exist for competitive, integrated employment, it should be recognized that other valid service outcomes may occur, including paid work in center-based program settings, in accordance with the Fair Labor Standards Act, self-employment, and volunteer (unpaid) work.

11. When individuals choose to pursue competitive, integrated employment, service providers should use best, promising, emerging practices with respect to the provision of services and supports to obtain and maintain competitive, integrated employment.  Technical assistance should be available to service providers for the purpose of expanding and improving their capacity to use such practices.

12. Under the Home and Community-Based Services (HCBS) waiver program, a continuum of services are authorized, including day habilitation services and expanded habilitation services (such as prevocational services and supported employment services).  Prevocational services may be furnished in a variety of settings that are designed to enable persons with a disability to acquire, improve, retain (maintain), and prevent deterioration of functioning that prepare them for paid or unpaid employment.  Such prevocational services should not be job-task oriented but instead, aimed at a generalized result.

The need for prevocational services should be identified in an assessment of adaptive behavior, which includes behavioral, self care, social, communication, and vocational skills.  Goals and objectives should be based on this assessment, and should be part of the individual’s habilitation/care plan, which is developed by a full interdisciplinary team (IDT).  The IDT should include the individual, a guardian (if one has been appointed), professionals completing the assessments, and direct service personnel who will carry out the plan of care.
 

The goals and objectives in the plan must reflect services to meet the individual’s expanded habilitative needs rather than explicit employment objectives.
The amount, duration, and scope of prevocational services provided to an individual should be based on the individual’s needs identified in the assessment that arise as a result of his or her functional limitations and/or conditions, including services that enable the individual to acquire, improve, retain (maintain), and prevent deterioration of functioning consistent with the individual’s interests, strengths, priorities, abilities and capabilities.
 

Prevocational services provided to individuals may assist them in reaching their optimal level of functioning.
A state should never subject an individual to arbitrary time limits regarding the provision of prevocational services, such as time limits based on the site or location of the prevocational services or by substituting part-time services for full-time services when full-time services are considered necessary and appropriate by the IDT.
 

13. There is a need to make available necessary and sufficient funding if states expect service providers to increase opportunities and options that result in employment outcomes that are consistent with an individual’s choices, interests, strengths, priorities, abilities, and capabilities.

At Merrick, Inc., we define “meaningful employment” as having the following five elements:  (i) a task preferred by the client; (ii) completed in a setting of the client’s choice (e.g. facility-based or employer-based); (iii) appropriate for the client’s demonstrated abilities; (iv) consistently available for the client’s desired schedule; and (v) generates a wage satisfactory to the client.  Notice these are based on client choices and abilities not some universal outcome desired by a bureaucracy looking to reduce expenses and/or professionals desiring more speaking engagements.

I would encourage professional organizations to discuss the values and principals outlined above with the intent to adopt and practice them to the best of our abilities.  As I stated in my first editorial, it is ALL about a commitment to – “self-determination and genuine person-centered planning so that each client’s unique needs, expressed preferences, and informed choices are known and acted upon”.  Anything else is just VAPOR.