Author: John Wayne Barker

Most often we are told that between 2% and 4% of the general population has a developmental disability (DD).  Applied to the most recent census, that results in approximately 103,000 to 206,000 people with DD living in the State of Minnesota.  In 2005, DHS reported an unduplicated count of 28,833 recipients in the Home & Community Based Service (HCBS) waivers (CADI, CAC, TBI, MR/DD) and Medicaid (MA) program (ICFs/MR); and 12,524 unduplicated recipients in Day Training & Habilitation (DT&H) programs.  If 3% of the state’s population has DD, it follows that only 18.7% of them are receiving HCBS or MA services and only 8.1% receive DT&H services.  Said another way, at least 81.3% of our citizens with DD live without HCBS or MA services and 91.9% either work in typical jobs, are in school, choose not to work, or have retired.  While I do not accept the report’s implication that clients of DT&H programs are under- or un-employed, even if that is one’s opinion, 8.1% is a much different number than the range of 60-70% cited in the report.  It is time to stop using misleading statistics that only engender arguments and never produce action; and leaders within our industry should spend their time meeting the wage expectations of those they support and not concern themselves with unemployment statistics that mean nothing to those we serve.

The “real need” is not to reform the vision and goals driving Minnesota’s educational and rehabilitation systems as called for in the report.  Rather, the real action is to practice genuine person-centered planning for every recipient of HCBS or MA services.  It is not “Employment First” as declared in the report.  Rather, it is “Self-Determination First” as asserted by self-advocates.  As Burton Blatt once said, “Why does reformation always result in sameness?”  Systems are systems and you cannot reform them to be individualized.  Instead, all system initiatives should be focused on minimizing itself to operate within the background with person-centered planning operating in the foreground.  I submit that action happens only at the point of service delivery and, in this case, only through self-determination.

The report asks the question – “Why shouldn’t Minnesotans with significant disabilities live and enjoy their lives as their peers do?”  Who are these peers and, if you can identify them, why do we assume that people with DD want to use them as the benchmark in evaluating how much they enjoy their lives?  I am not sure why being a person with DD is still so undesirable that we need to make them more like us as though us all “enjoy our lives?”  A de-facto reality is that you cannot accurately compare the experiences of someone receiving HCBS or MA services to the general population, so let’s stop trying.  Instead, let’s assist the individuals we support to define their own quality of life and then creatively use our resources to make steady progress in realizing their hopes and dreams.

I understand why some portray the DD cause as a human rights issue.  I respectfully disagree.  A generic definition of human rights would be freedom from arbitrary interference or restriction by government and the term often suggests that the civil liberties or civil rights of an individual or group have not been recognized.  Civil liberties typically refers to fundamental individual rights, such as freedom of speech and religion, protected by law against unwarranted governmental or other interference; with civil rights most often thought of as rights belonging to an individual by virtue of citizenship, especially the fundamental freedoms and privileges guaranteed by the 13th and 14th Amendments to the U.S. Constitution.  With regard to people with DD, while government may not always provide supports and services in the manner preferred by a specific individual or group, government action can hardly be described as interference or restriction.  Moreover, government funds many of the agencies whose sole purpose is to advocate for people with DD.  Instead, we have what some describe as a social change movement that could be defined as an effort to change public expectations on a particular issue.  The report seems to understand this concept as it states that “Changing public expectations is the engine of social change.”  However, the report focuses on just an element of a person’s life – that being employment – whereas I believe we need to focus on the whole person by ensuring that each person with DD has the greatest degree of self-determination they desire to control.

I agree with the report that work is fundamental to adulthood and quality of life, that working age adults with DD should be expected to work, and that our system should have an opt-out versus an opt-in feature when it comes to work.  And, with two edits, I agree with the following statement in the report – “Minnesota can move forward and make historic changes leading to increased job placement and integrated employment in the workforce as a desirable option for all youth and working age adults with disabilities.”  Still, work means more than integrated employment in the workforce and work is not the only valued contribution that people with DD can make to their communities.  So, if a person with DD chooses to attend a post-secondary school, volunteer, participate in habilitation activities, work part-time, or retire before they die – why is this considered a negative outcome?  The SSA definition of disability requires that a recipient is “unable to engage in any substantial gainful activity…” presuming, it seems, that most everyone in the HCBS and MA program requires long-term support.  Let’s be honest and recognize that economic self-sufficiency is an unachievable goal for most recipients of HCBS and MA services; and expecting this becomes another failure to erode their self-esteem.  Whereas, less support is an achievable outcome that can be evaluated at least annually with the individual’s support team.

I am not a fan of the one size fits all model called for in the report, with the employment first mantra and implication that all people with disabilities should be integrated into the workforce.  With 60% of the general population having some qualified disability, what is the consensus definition of integration and why do we assume that everyone with DD is willing to accept what can be a stressful situation?  Minnesota enjoys a broad continuum of services offered by rehabilitation agencies, sheltered workshops, DT&H programs, and adult day services that can meet the variety of supports desired by people with DD.  Should we get better at supporting people with DD in paid, integrated employment in the non-disabled workforce?  Yes, but not to the exclusion of the desires of people with DD for other options as determined through a person-centered planning process.

The report calls for “real work at real wages” at “minimum or prevailing wages and benefits” and suggests the “removal of sub-minimum wage” work.  Let’s be clear on this point.  The issue is about economic fairness not the minimum wage (as though the minimum wage can offer economic self-sufficiency).  The special certificate used by most vocational service providers is an amendment to the Fair Labor Standards Act permitted by the U.S. Department of Labor to pay people with DD a commensurate wage based on their productivity.  It is based on the real prevailing wages of non-disabled workers completing similar real work in the local market.  Done correctly, the commensurate wage system offers the person with DD an opportunity to earn the same real wage as a non-disabled person performing the same real work.  The only time a person with DD is making less than the minimum wage is when their productivity is below the quantity needed to generate that wage.  Everything I’ve heard from self-advocates is about the opportunity to have real work and be valued members of their community.  I’ve not heard them say we want to use public dollars to subsidize our wages to create an illusion that we are valued and respected workers; or that they are willing to lose their MA benefits for a private insurance policy that is less comprehensive.  These special certificates are a good option to offer real work at real wages to people with DD and we need to focus on each individual’s work preferences and wage expectations rather than spend anymore time debating an irrelevant minimum wage issue.

In summary, I didn’t find the “consensus recommendations” in the report to be particular new or insightful; and I certainly don’t think we need to divert limited funding from client supports to a new “Training and Technical Assistance” bureaucracy.  Also, I am not inspired by the idea of Minnesota being a “leader” as I know from experience that no other state will follow our practices anymore than Minnesota will follow theirs.  The report was useful in understanding why a systems reform approach that focuses on “employment first” is not the strategy to follow.  Instead, 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, politicians and bureaucrats need to minimize the system to simply determine recipient eligibility, assess service options, authorize providers, account for expenses, protect health & safety, measure quality, and get out of the way.  Professionals need to commit themselves 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.  And, people with DD need to keep striving for social change.  If we listen to them, we may eventually get it right.

Disability:

The Social Security Administration (SSA) defines disability as “The inability to engage in any substantial gainful activity (SGA) because of a medically determinable physical or mental impairment(s) that can be expected to result in death, or has lasted or can expect to last for a continuous period of not less than twelve months” (http://www.socialsecurity.gov/redbook/eng/overview-disability.htm#5).  The “medically determinable or mental impairments” recognized by SSA include the following TWELVE categories:  cardiovascular system, digestive system, genitourinary system, hematological disorders, immune system disorders, malignant neoplastic diseases, mental disorders, musculoskeletal system, respiratory system, skin disorders, special senses and speech, and impairments that affect multiple body systems.  I did not review all these categories, still I guessed it captured a lot of people so I searched for some disability prevalence statistics and found the following two sources.  First, according to the 2006 American Community Survey, 15.1 percent of the civilian non-institutionalized population 5 years and over in the United States, or about 41.3 million people reported a disability (www.census.gov/hhes/www/disability/whatsnew.html).  Second, The Centers for Disease Control and Prevention reported that in 2005, disability prevalence across all 50 states ranged from 11.4% to 25.8%, with an average or median estimate of 20% (www.cdc.gov/ncbddd/dh/disabilityprevalence.htm).  Based on the current U.S. Census data this means that 60,885,046 citizens, or 2 of every 10 people you encounter on a daily basis, have a physical or mental impairment that meets the very severe SSA disability definition.

Integration:

“The bringing of people of different racial or ethnic groups into unrestricted and equal association” from The American Heritage Dictionary of the English Language, Fourth Edition;
“Coordination of mental processes into a normal effective personality or with the individual’s environment” from Merriam – Webster’s Medical Dictionary; and
“The state of combination or the process of combining into completeness and harmony” from The American Heritage Stedman’s Medical Dictionary.
 

Segregation:

“The policy or practice of separating people of different races, classes, or ethnic groups, as in schools, housing, and public or commercial facilities, especially as a form of discrimination” from The American Heritage Dictionary of the English Language, Fourth Edition;
“The removal of certain parts or segments from a whole or mass” from The American Heritage Stedman’s Medical Dictionary; and
“The act of segregating, or the state of being segregated; separation from others; a parting” from Webster’s Revised Unabridged Dictionary.
 

For me, the key terms of integration I got from these definitions are:  unrestricted and equal association, coordination with the individual’s environment, and combining into completeness and harmony.  The key terms of segregation I got from these definitions are:  the policy or practice of separating people, removal from a whole or mass, and separation from others.  I will come back to these terms because, for me, they are somewhat abstract without some personal reference.  To this end, I chose to analyze my Outlook contact list to understand my own I/S status with the following results:

There are 627 people in my contact list;
These 627 people fall into the following 3 self-defined categories – 442 are acquaintances (70%), 143 are family members (23%), and 42 are friends (7%);
The 442 in the acquaintance category fall into the following 4 self defined groups – 308 are professional contacts (70%), 67 are people in my community (15%); 44 are my children’s friends (10%); and 23 are my school or college classmates (5%);
The 143 in the family category include relations going as far as 2nd cousins from both my wife’s and my family that we see on a regular basis; and
The 42 in the friend category fall into 3 self-defined groups – 19 are from my community (45%), 16 are my school or college classmates (38%), and 7 I befriended through my professional activities (17%).
 

Here is what I learned.  First, 70% of the people I know are acquaintances and, of this group, 70% are people I only interact with professionally.  Since they are working, I can assume they do not meet the SSA definition of disability.  However, they may have less severe conditions in any of those SSA categories or other conditions that impair their functioning.  Since integration requires an awareness of people’s differences, and I am mostly unaware of any impairments these acquaintances may have, the issue of I/S becomes irrelevant.  Second, my family is a segregated group (separate from others by genetics or marriage) that accounts for 23% of my contacts.  Third, my friends (despite my zubaz) account for only 7% of my contacts, are the only group where integration is relevant to me, and only 17% of these contacts come from my professional activities with 83% coming from my community and/or school activities.  All of this leads me to the following questions:

My results suggest that the most productive place to realize integration would be in the individual’s own community and secondarily in the public schools which already emphasize integration by “mainstreaming” students with DD into the “regular” classrooms.  So, why do we expect work activities for people with DD to primarily address the Question of I/S when, for me, 35 of my 42 friends came from my community and school activities?
A common explanation of integration seems to be that the person with DD should be interacting with people not paid to support them.  In my case, 50% of the people I know are professional contacts who are paid to interact with, and sometimes support, me.  So, what does paying someone to interact and support another person have to do with integration?
People with DD have unrestricted access to their community, and equal association can only be determined by the group someone chooses to join.  Coordination with the individual’s environment can be facilitated through assistive technology, reengineering space, and connecting a person to their local community.  Accomplishing completeness and harmony can only be determined by the individual.  Why is where a person with DD works more important than these realities.
The State of MN does not have a policy or practice of separating people, removing them from a whole or mass, or separating them from others.  Quite the contrary, in 2005 DHS reported that the statewide average for community work crews and individuals placements was 8.7% and 39.3% respectively.  Using these numbers, of the approximately 13,000 people served by DT&H programs, 40% or 6,240 people are supported in integrated settings.  Given that few people with DD are still living in our state hospitals, whereas many of the comparison states offered by our critics have significant state hospital populations, whats the beef with Minnesota?
However, even my questions are irrelevant; and that is the seminal point.  Utlimately, the Question of I/S is only relevant as part of a self-determination and person-centered planning discussion that genuinely addresses the person’s:  (i) unique needs; (ii) expressed preferences with regard to housing, satisfactory work, reasonable transportation, and meaningful relationships; and (iii) informed choices.  How can choosing to work with a peer group that shares your personal characeteristics, interests, and situation be compared to a “state of being segregated”?  We need to realize the Question of I/S has been asked and satisfactorily answered; and it is time to focus on individual objectives rather than contradictory system values that seek “sameness” by creating an awareness of “differences.”

For the minimum wage issue it seems useful to have a common frame of reference before reaching any conclusions.  So, let’s begin with some history on the minimum wage issue with information obtained from the Department of Labor website (www.dol.gov/esa/whd/minimumwage.htm).

The federal minimum wage provisions are contained in the Fair Labor Standards Act (hereinafter “Act”) and go back to 1940 with an amendment that excluded Puerto Rico and the Virgin Islands from the statutory rates applicable elsewhere in the U.S.  On May 14, 1947, the Act was amended by the Portal-to-Portal Act that resolved some issues as to what constituted compensable hours.  In 1949, the minimum wage was raised from 40 to 75 cents an hour for all covered workers and coverage was expanded to include workers in the air transport industry.  Also, a specific section was added granting the Department of Labor (DOL) authorization to control the incidence of exploitative industrial homework.  In 1955, the year I was born, the minimum wage for covered hospital workers caring for my mother and I was raised to a whole $1.00 an hour!

The 1961 amendments greatly expanded the Act’s scope in the retail trade sector and increased the minimum for previously covered workers to $1.15 an hour effective September 1961 and to $1.25 an hour in September 1963.  Retail and service establishments were allowed to employ fulltime students at wages of no more than 15 percent below the minimum with proper certification from the DOL.  Congress further broadened coverage with amendments in 1966 that extended coverage to public schools, nursing homes, laundries, and the entire construction industry.  Farms were subject to coverage for the first time if their employment reached 500 or more days of labor in the previous year’s peak quarter.  The minimum wage went to $1.15 in February 1968, $1.30 in February 1969, $1.45 in February 1970, and $1.60 in February 1971.

In 1974, Congress included under the Act all non-supervisory employees of Federal, State, and local governments and many domestic workers.  The minimum wage increased to $2.00 an hour in 1974, $2.10 in 1975, and $2.30 in 1976 for all except farm workers, whose minimum initially rose to $1.60.  Parity with non-farm workers was reached at $2.30 with the 1977 amendments and established a new uniform wage schedule for all covered workers.  The minimum went to $2.65 an hour in January 1978, $2.90 in January 1979 (the year I graduated from college and got my first fulltime professional job), $3.10 in January 1980, and $3.35 in January 1981.  The amendments eased the provisions for establishments permitted to employ students at the lower wage rate, allowed special waivers for children 10 to11 years old to work in agriculture, and eliminated the overtime exemption for employees in hotels, motels, and restaurants.

A 1985 Supreme Court decision led to amendments that permitted State and local governments to compensate their employees for overtime hours worked with compensatory time off in lieu of overtime pay, at a rate of 1 1/2 hours for each hour of overtime worked.  The 1989 amendments eliminated the minimum wage and overtime pay exemption for small retail firms.  Thus, employees of small retail businesses became subject to minimum wage and overtime pay in any workweek in which they engaged in commerce or the production of goods for commerce.  The minimum wage was raised to $3.80 an hour beginning April 1, 1990, and to $4.25 an hour beginning April 1, 1991.  Finally, the amendments established an overtime exception for time spent by employees in remedial education and civil money penalties for willful or repeated violations of the minimum wage or overtime pay requirements of the law.

The 1996 amendments increased the minimum wage to $4.75 an hour on October 1, 1996, and to $5.15 an hour on September 1, 1997.  The amendments also established a youth sub-minimum wage of $4.25 an hour for newly hired employees under age 20 during their first 90 consecutive calendar days after being hired by their employer; revised the tip credit provisions to allow employers to pay qualifying tipped employees no less than $2.13 per hour if they received the remainder of the statutory minimum wage in tips; and amended the Portal-to-Portal Act to allow employers and employees to agree on the use of employer provided vehicles for commuting to and from work, at the beginning and end of the work day, without counting the commuting time as compensable working time under certain conditions.

The 2007 amendments increased the minimum wage to $5.85 per hour effective July 24, 2007; $6.55 per hour effective July 24, 2008; and $7.25 per hour effective July 24, 2009.  In its current form the Act permits:  (i) youths under 20 years of age to be paid a minimum wage of not less than $4.25 an hour during the first 90 consecutive calendar days of employment (employers may not displace any employee to hire someone at the youth minimum wage); (ii) employers to pay employees on a piece‑rate basis, as long as they receive at least the equivalent of the required minimum hourly wage rate; (iii) employers of tipped employees (i.e., those who customarily and regularly receive more than $30 a month in tips) to consider such tips as part of their wages, but employers must pay a direct wage of at least $2.13 per hour if they claim a tip credit and meet certain other conditions; and (iv) the employment of the following individuals at wage rates below the statutory minimum wage under certificates issued by the Department of Labor:

Student learners (vocational education students);
Full‑time students in retail or service establishments, agriculture, or institutions of higher education; and
Individuals whose earning or productive capacities for the work to be performed are impaired by physical or mental disabilities, including those related to age or injury.
Many states also have minimum wage laws that provide greater employee protections and, in those cases, employers must comply with both.  Referencing our State’s website (www.doli.state.mn.us/minwage.html), Minnesota has established the following minimum wage requirements:  $6.15 an hour for large employers (any enterprise whose annual gross volume of sales made or business done is not less than $625,000); $5.25 an hour for small employers (any enterprise whose annual gross volume of sales made or business done is less than $625,000); and $4.90 an hour for training new employees who are younger than age 20 during their first 90 consecutive days of employment (permanent or current employees may not be displaced by new employees covered by the training wage).  Minimum wage rates apply to all hours worked, whether part time or full time.  No employer may take a tip credit against an employee’s wage under Minnesota law and employees must be paid the current minimum wage rate, regardless of the method of compensation.  Exempt employees include (partial list):  babysitters, taxicab drivers, volunteers of nonprofit organizations, elected government officials, people providing police or fire protection, and employees subject to the provisions of the U.S. Department of Transportation (drivers, drivers’ helpers, mechanics and loaders).  In January 2007, legislation was introduced to increase the State’s minimum wage to $7.75 by August 2008, index the State’s minimum wage to inflation, and repeal the State’s sub-minimum wage for teen workers.  Although it passed both bodies of the legislature, the bill was vetoed by Governor Pawlenty at the end of the 2008 legislative session.

So, what conclusion seems relevant to people with disabilities paid by DT&H programs?  Unless I am missing something, the Act applies ONLY to “covered employees” which does not include people with disabilities “paid by” a DT&H provider.  My reasoning for why people with disabilities paid by a DT&H are not employees of the agency is as follows:

1. As recent as November 2005, we received a determination from the U.S. Department of Treasury that states “We find the worker is not an employee of Merrick, Inc., for Federal tax purposes”.  Now one can argue that this determination only applies to the relationship between a specific worker and the company, and that this determination could either be affirmed or overturned in a subsequent IRS audit; still it is what it is and many DT&H providers have similar determinations on file that make it clear that an employee-employer relationship does not exist when services are provided to people with disabilities and the following conditions are met:

The services are for therapeutic or rehabilitative purposes;
The services are not performed as a means of earning a living;
The services do not take the place of services that would otherwise be performed by the firm’s regular employees;
The individual’s physician, rehabilitative or therapeutic center, or workshop retains final control of the individual;
Such control is protective control and not the control of an employer over an employee.
I submit that, by license, all these conditions are met by all DT&H providers; and this position is supported by Private Letter Ruling 9410012 reinforcing Revised Rule 65-165 on facts at least as favorable as those at Merrick and, I suspect, other DT&H programs as well.

2. There are numerous experts that consult and provide training on the Act and commensurate wage compliance that assert an employment relationship exists whenever and individual, including an individual with disabilities, is “suffered or permitted” to work; which appears to be defined as physical or mental exertion resulting in something that benefits the employer.  This is further clarified with the following condition that a major factor in determining if an employment relationship exists is whether the work performed is of any consequential benefit to the organization.  While I am not sure what the IRS would consider “consequential”, I am sure that using audited numbers Merrick could prove that our cost to “permit” clients to work is greater than the revenue generated.  Further, the work being “suffered” is desired by the client(s) and would be immediately discontinued if no client was interesting in performing the tasks.  Therefore, there is no employment relationship between clients enrolled in our program and the company.

3. Finally, there is the “common sense” view that clients are not employees of the DT&H based on the simple fact that they are “enrolled in the program and not hired or fired”.  If we do not “control” this basic element of an employee-employer relationship, then clients are simply not employees of the DT&H provider.

Therefore, if clients are not employees of the DT&H provider the minimum wage provisions do not apply to their earnings and, by extension, a commensurate wage certificate is not required!  Now there will be plenty of people saying I am wrong and, admittedly, even I am having difficulty with this conclusion.  So, I sent a draft of my article to an expert for comment and, though I know it was received, I got no reply.  Therefore, perhaps I am right?  Wouldn’t this be a change in the status quo leading to some interesting possibilities?  For example, DT&H providers could be more competitive in their bidding practices thereby securing more work options for clients and higher earnings.  It might also mean that businesses would employ more clients of a DT&H because they could pay them a commensurate wage, thus providing an incentive to employ more people with disabilities in an integrated setting.  Both of these, higher earnings and integrated jobs, seem to be good outcomes.

I am hoping that one of two things happens from this editorial.  First, someone will offer concrete evidence that clients paid by a DT&H are covered employees or that an amendment of the Act extends the minimum wage provisions to this group.  If this happens then we can move on and discuss the economic fairness of the commensurate wage certificate.  Otherwise, I hope that the U.S. Department of Treasury finally decides to clarify the status of these “unclassified workers” so that all of us can move forward with a common and consistent definition.  This group of workers is becoming larger, with greater earnings potential, and we need a national policy on their classification status.

The easy answer is to say “we need to know what a client can’t do” so we can fit the peg into the correct shaped hole.  The harder question is to ask “what can the client do” and then work on their behalf to develop a job that both meets their interests and is valued by the business.  Referred to as “customized employment”, this shift in practice is something that we are beginning to embrace at Merrick and in June 2010, 5 of our employees will begin participating in a 1-year customized employment (CE) training program through the U of M.

While many in the industry feel that CE only applies to clients hired directly by a business, I feel it is just as relevant to clients that choose to work on-site.  Admittedly, my view is unpopular with those that declare themselves as “champions” of CE and feel that on-site supports are just the latest version of institutional warehousing.  I can only defend my position based on the many personal victories I have witnessed here and suggest that our critics be brave enough to look from the inside out.

One of our Coordinators shared the following thought with me – “When clients are referred to us, they often come in with a documented history of significant behavioral challenges.  In a sense, they are labeled as ‘aggressive, abusive, self-injurious, behavioral…’  Based on the premise that it is normal to be abnormal, we have come to expect that each person comes to us with these special gifts.  However, we do not enter a relationship with them with the idea that we are going to change them.  We do not have a mold for which we try and fit people in.  Instead we try to figure out how to safely get them from one place to another, how not to allow anxieties to take control, and to understand their wants and needs when they communicate in unconventional ways.  We get rid of the pressure on them to change, and find the great gifts that make them who they are.  The work we put into understanding and helping them overcome challenges forces us to open our minds and look at things differently.  We find better ways to ambulate, communicate, initiate, and achieve our ‘best outcomes’ not only within our four walls but also to creatively serve people at home, at work, and in the community.”

So, while we will continue to sharpen our skills in CE, it is just as important to stay true to person-centered planning and support a client’s choice even if it does not match the philosophy of others.  We will certainly make mistakes as we shift from the “can’t not” to the “can” perspective; and we hope others will join us in recognizing that system reform only happens at the point of service delivery.  Regardless, we will persist because we become better people when we see the abilities in others and it is truly a gift when you see how they benefit from the support provided