Please note that Merrick, Inc. will be closed on Thursday, November 28, and Friday, November 29,
in observance of Thanksgiving. Regular hours will resume on Monday, December 2.

Author: John Wayne Barker

Independence to Inclusion

On April 15, 2014, Twin Cities Public Television debuted “Independence to Inclusion” a show produced with the support of the MN Governor’s Council on Developmental Disabilities. I first watched it in March because a number of the people in the show are served at Merrick. At the time I noted some remarks that challenged my perspective of how and why our human service system operates. I watched it again after the Independence Day holiday and encourage others to do the same by clicking on the following link – http://bit.ly/1tk5dDW. It is 27 minutes that will enable you to examine your own beliefs on society’s role in disability services.

I agree with those in the show who state that humans are not born with a predisposition to discriminate against others because of the color of their skin, religion, disability, or any other notable characteristic difference. It also seems most everyone agrees that discrimination is a behavior that we learn from verbal and non-verbal experiences in our everyday lives. I also agree that disability, “an impairment that substantially limits typical life activities”, is most often a naturally occurring event in human reproduction and is neither a choice nor an illness to be cured. Finally, as one of the people in the show stated – “you cannot legislate morality and attitudes.” Still, I believe government has a role to ensure every citizen’s freedom from discrimination and to establish protections and legal recourse.

Where I disagree with some in the show, is with the assertion that “the system” is evil and seeks to continue the client’s dependency to protect human service system jobs. Throughout the nation, many people with disabilities are contributing much to the economy, diversity, and enrichment of the communities in which they live. While great strides have been made in supporting the presence of people with disabilities in local communities through employment, the truth is that few of these people have solid, reciprocal connections and support networks. Many are in fact more like visitors to communities rather than true community members. It is my belief that supporting people with disabilities to be a part of their community was never intended to be the role of the “day service system.” Protection rather than connections was the focus.

Based on what we have learned over the last two decades, day service providers need to shift their role and find ways to open doors, build bridges, make introductions and support relationships. In other words, our new role is to create and support opportunities for people with disabilities and other community citizens to come together and share common experiences. There are many ways we can support the inclusion of people into the community, for example:

• Getting to know a person and the talents and gifts they have to offer;

• Encouraging people to maintain their relationships;

• Supporting people to develop new relationships;

• Assisting people to learn how to do things they need or want to know;

• Getting people to participate in community activities based on their interests and cultural connections;

• Providing assistance and support to be healthy and safe; and

• Ensuring back-up to a person when asked.

However, we need to constantly remind ourselves that our role is to support the inclusion of people into their community, not to be their community. People with disabilities, their families, friends, and allies are teaching us much about the importance and value of listening to and being guided by people who experience the “services” or supports, since they are in the best position to know how it works and feels for them. We are learning that the needs of people with disabilities have little to do with their disability and much to do with where they live, work, and play. Supports need to take into consideration the cultural/ethnic background of people as well as their preferences. As professionals in the service system, we can and should make it a focus of our programs to connect the people we serve to their communities.

 

Tell the Whole Story

TELL THE WHOLE STORY

I am not an economist, labor expert, or politician so I am NOT going to weigh-in on the merits or concerns with raising the Minnesota minimum wage for large employers to $9.50 an hour. I am pleased to report that all of our employees are paid more than $9.50 an hour and the average wage for direct care staff is above $14 an hour. As a nonprofit we have spent considerable time developing a compensation plan, participating in salary surveys every two years, and evaluating data from the Bureau of Labor Statistics. We understand that a basic quality of life in Minnesota requires an income above the minimum wage and have used the information found on the Jobs Now Coalition website (http://www.jobsnowcoalition.org/) in our compensation plan.

In an about face, the Obama administration has now decided that the federal minimum wage of $10.10 an hour DOES apply to those workers with disabilities employed under service or concession contracts with the government. As Michelle Diament of DisabilityScoop (http://www.disabilityscoop.com/2014/02/12/under-order-pay-hike/19102/), reports. “We applaud the administration for hearing the voices of the disability community and including disabled workers in the new minimum wage protections for contractors,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, one of 25 groups that signed a letter from the Collaboration to Promote Self Determination urging the White House to include workers with disabilities. To be clear these zealots are NOT part of our disability community and their intent is very clear in the following quote, “We hope to work with them going forward to convince Congress to repeal Section 14(c) for all disabled workers,” Ne’eman said. “Equal rights should apply to everyone — President Obama and (Secretary of Labor Tom Perez) helped us take a significant step forward towards realizing that vision today.” Unfortunately, Ne’eman chooses to further inflame the discussion by suggesting it is an “equal rights” issue when it is truly an economic issue.

I’ve written about commensurate wage on five separate occasions (Bytes 1, 4, 14, 18, & 19) and won’t repeat myself other than to provide the following brief description of the commensurate wage certificate that is permitted by the U.S. Department of Labor (DOL) to pay people with disabilities a wage based on their individual productivity. To be factual, providers are NOT paying sub-minimum wages to anyone and opponents choose to use this term because it sounds more negative. Providers with an FLSA 14(c) commensurate wage certificate are paying special minimum wages that are rigorously monitored, subject to renewal procedures, and enforced by the DOL. Calculating a special minimum wage requires the provider to establish the local market wage, not the minimum wage, and the output of a worker who is non-disabled to determine the “unit rate” for the work to be completed. The provider must then track the number of units the worker who is disabled produces and multiple this by the rate to determine each individual’s earnings. Everyday workers who are disabled are paid more than the minimum wage because they produce units at a rate exceeding the standard. And what the zealots don’t tell you is that any increase in the minimum wage will likely increase all prevailing wages resulting in a commensurate increase to workers with disabilities. Instead they select the quotes that best support their rhetoric to repeal the commensurate wage regulations.

What they also don’t tell anyone is the devastating impact getting rid of commensurate wage practices will have on those with disabilities that have limited work options. The reality is the “market” is not going to pay the same wage for workers with disabilities to produce less than workers without disabilities; and if the commensurate wage regulations are repealed people with disabilities are going to have an equal right to sit at home and not earning any wage. As a provider we are only able to secure contracts with businesses that offer meaningful work to clients because the commensurate wage certificate permits us to offer labor costs that match the market. To expect businesses to pay more than “market value” for a unit is asking the private sector to subsidize the human service system and this added cost would have to be passed onto the consumer inflating the cost of living and essentially become a hidden tax. Finally, let’s talk about choices for workers who are disabled and their families. No one is required to be served by a provider with a commensurate wage certificate. If a person with a disability does not want to be paid a special minimum wage they are free to find a job on their own for a wage they find acceptable.

The Senate Health, Education, Labor and Pension (HELP) Committee passed the Workforce Reinvestment Act (WIA) reauthorization amendment on 7/31/2013 with bipartisan support of 18-3 that updates the commensurate wage regulation. It is time to say enough with the half-truths and distracting rhetoric and send a note to Senators Franken and Klobuchar asking them to ignore these false prophets and support the WIA reauthorization amendment as passed by the HELP committee. The people we serve have been certified as disabled, by law are vulnerable adults, rely on transportation services, require 24-hour support and supervision, and cannot function independently in a business setting or they wouldn’t be in our program. To demand they be placed in a full-time job making at least minimum wage with benefits and only natural supports from the employer is bureaucratic VAPOR (Very Appealing Promises Obfuscating Reality) that is exacerbated by the threat to now eliminate their choice to make meaningful wages through a commensurate wage program.

The zealots, wannabe speakers, and bureaucratic theorists are acting as false prophets in attacking our most important tool in providing meaningful work to the clients in our program. We need to identify these 25 “groups”, cancel our memberships, and publicly criticize their misguided actions. There is no need to destroy an option that permits providers and businesses to offer meaningful work at a fair wage to millions of our citizens with disabilities. If you don’t get engaged who will? Send your letter asking for support of the WIA reauthorization amendment to:

Senator Amy Klobuchar
1200 Washington Avenue South, Room 250
Minneapolis, MN 55415

Senator Al Franken
60 East Plato Boulevard
St. Paul, MN 55107

Sustaining the Good

On November 14, GiveMN will host its fifth Give to The Max Day (GTMD) event. Merrick, Inc., will again participate with a goal of highlighting and funding our partnership with Dodge Nature Center, another local nonprofit. Before giving you all the details on our 2013 GTMD plans, I want to step back and take a bigger look at the nonprofit sector in Minnesota. Using information from the “2013 Minnesota Nonprofit Economy Update” provided by the Minnesota Council of Nonprofits, I found the following results to be most interesting:

• In 2012, there were fewer than 3,600 nonprofit employers in the state, which is slightly down from previous years.

• Nonprofits employed 304,236 people in 2012 and, primarily due to adding locations, experienced a growth of 9% since 2007 whereas the for-profit sector had a 3% loss of employment during the same period.

• Of the 2,644,909 employees counted in this report, 75% were in for-profits, 14% in government, and 11% in nonprofits.

• After removing hospitals (33% of nonprofit employees) and higher education (5% of nonprofit employees) from the total count, weekly nonprofit wages trailed the government sector by 5% and the for-profit sector by 11%. Average weekly wages in the nonprofit sector are highest in the healthcare industry and the lowest for vocational rehabilitation, childcare providers, and civic organizations.

Another report from the Minnesota Council of Nonprofits is their “Nonprofit Current Conditions Report”. It is based on a survey sent to 2,000 nonprofits that was completed by 436 organizations throughout Minnesota and offers a real-time analysis of changes that nonprofits have experienced in 2010. Some of the more interesting changes I noted include:

• Seventy-four percent of nonprofits reported an increase in service demands compared to 42% and 60% in 2008 and 2009 respectively.

• More than 7 out of 10 nonprofits reported they were able to increases services to meet demand, up slightly from 2009.

• Demand for mental health services had the highest spike with an increase of 92% from 2009.

• The percent of nonprofits reporting a decline in total revenue in 2008, 2009, and 2010 was 55%, 61% and 37% respectively.

• In out-state, 62% of nonprofits in South Central/Southwest and 50% of nonprofits in Southeast Minnesota reported a decline in total revenue whereas only 29% of nonprofits in Central and Northern Minnesota reported a decline in total revenue.

• In general, nonprofits have access to three main sources of revenue: individual contributions; earned income, and grants from private foundations and corporate giving programs. Coming out of the recession, in 2010 only 31% of nonprofits reported an increase in individual contributions and 26% reported an increase in foundations and corporate giving. It appears that giving from private foundations and corporate programs continues to decline at a higher percentage than individual contributions.

There are two points I want the reader to take away from this editorial.

1. Nonprofits are a vital economic sector providing at least 11% of all employment in Minnesota; and

2. Giving from private foundations and corporate programs is going down so the need for contributions from individual supporters is critical to sustaining the good works of the state’s nonprofits.

This is where your support can make a difference by participating in our GTMD campaign. The focus this year is on our partnership with fellow nonprofit Dodge Nature Center (DNC) that employs a crew from Merrick. Referred to as the “A Team”, this crew has formed genuine relationships with DNC staff and demonstrates to visitors, many of whom are schoolchildren, that they have “real jobs” and are contributing members of society. Please take a moment to read more about the partnership and, as an individual, help us activate our two generous matching grants from Kowalski’s Markets and Wolf Motors for this year’s GTMD by visiting: www.razoo.com/story/Merrickinc

sisyphus pic

Sisyphus

sisyphus picIn my last post I reflected on staying optimistic despite 33 years of feeling like Sisyphus from Greek mythology who, for eternity, is sentenced to roll an immense boulder up a hill only to watch it roll back down and the byzantine challenges we now face for something called Medicaid reform. My optimism was further inspired by a Father’s Day card from my three adult children and wife. Each had written a note that was both personally unique and blended well with the others. While keeping their messages private I can share that, “when needed”, I was described as firm, giving of advice, being there, and a pain-in-the-butt. If I could figure out how to make that into a catchy button I would wear it proudly. I also enjoyed the adage that I have grown wiser as my children have grown older. While I also received some nice presents, the notes are what I will remember.

If I have a point it is this – often times we do things that may not have an immediate impact and can only hope that someday it makes a positive difference. It is even sweeter if we happen to be present on those occasions. So, the following is a list of things to consider doing in the hope that someday it will make a positive difference in the lives of the people we serve and our local communities.

  • Stay focused on processes that honor the client’s choice on the support needed for preferred housing, meaningful work, reasonable transportation, and genuine relationships. Clients want to be respected, given choices in their lives, and be valued in their communities, as we all do.
  • Involve yourself in community improvement projects, model respectful behavior, lift others up, and expect that our civic and political leaders have a broader vision of what is good for our communities and the courage to find innovative strategies to confront the challenges we face.
  • Secure meaningful work that is preferred by the client, completed in a setting of their choice, appropriate for their capabilities, with a consistent and desired schedule that generates a satisfactory wage. Moreover, if one performs any activity for any amount of compensation, they have a right to call it a real job.
  • Yield to those that have taken so much, with no sorrow for what they do. For hate wears you down and does not hurt your enemy. It is like taking poison and wishing your enemy would die.
  • Push DHS to simplify and to support providers/caregivers in delivering services that measurably improve the lives of clients and their communities in a manner that is sustainable by the citizens of Minnesota.
  • Heal thyself through devotion to an ideal or purpose larger than yourself, family and traditions, integrity and loyalty, having fun, and keeping things simple.
  • Understand that it is no longer acceptable to just do good work. We must also tell others why the clients and communities we serve are better for our services being provided or accept not being valued by policymakers.
  • Support the commensurate wage provisions as an important option for people with disabilities and vital to securing work from businesses that must be sensitive to production costs.

If you noted that the first letter from these bullets spells “SISYPHUS” then you know me too well and I hope my acronym didn’t cause TLDR (too long didn’t read) syndrome. For a variety of reasons we are not feeling particularly great at Merrick these days. Still, I know that we believe in what we are doing even when we do not always know what we might accomplish. Perhaps Sisyphus should be the DT&H provider mascot?

PickOne BB

Pick One

I’ve been writing these blog posts for a little over two years now and, with this being my 24th posting, I thought it was time to review and consider my “body of work”. The following list is what I feel are my most notable messages.

PickOne BB
JWB with four clients at Merrick he has known for 33 years

• Although improved since the arrival of our marketing & communications coordinator, I still have a tendency to write too much resulting in TLDR (Too Long Didn’t Read) syndrome.

• Reform will only happen when the “System” honors the recipient’s choice on the support needed for preferred housing, meaningful work, reasonable transportation, and genuine relationships. A safe home, sufficient food, adequate healthcare, and meaningful work are essential aspects in the life of an adult that no one would voluntarily give-up and should not be denied to others.

• The bureaucracy needs to deconstruct and focus on simple systems that (i) assess eligibility and support needs; (ii) authorize providers; (iii) account for expenses; (iv) protect health & safety; and (v) measure quality. From my view, the task for the Department of Human Services is to simplify and support providers/caregivers in delivering services that measurably improve the lives of recipients and their communities in a manner that is sustainable by the citizens of Minnesota.

• Funding of day service programs for people with intellectual or developmental disabilities produces nearly $3.00 of economic benefit for every $1.00 spent by the State. These benefits actually help to reduce and offset the actual, unavoidable cost of the 24-hour long term care for these individuals. Apart from any humanitarian concern for the less fortunate, State cuts to such programs are penny-wise and dollar-foolish.

• Meaningful employment should be defined as – (i) a task preferred by the client; (ii) completed in a setting of their choice; (iii) appropriate for their capabilities; (iv) with a consistent desired schedule; that (v) generates a satisfactory wage. While a job can certainly enhance one’s life, it does not define it like choice. Moreover, if one performs any activity for any amount of compensation, they have a right to call it a real job.

• Done correctly, the commensurate wage provisions provide an important work option to people with disabilities and paying a “special minimum wage” is not exploiting those we serve. Demanding that people with a significant disability requiring 24-hour support be paid minimum wage regardless of their productivity is both disrespectful to the individual and contrary to sound business practices.

• Segregation is not an issue in Minnesota and integration is a personal definition that should be valued. Moreover, based on some solid research, it could be argued that 74% of our citizens with intellectual or developmental disabilities of working age are in the workforce at minimum or competitive wages and benefits since they are living in their communities without any public support.

• The success stories I see most days inspire me to persevere despite what the critics say; and I mostly see sameness with clients that want to be respected, given choices in their lives, and be valued in their communities. It is no longer acceptable to just do good work. We must also tell others why the clients and communities we serve are better for our services being provided or accept not being valued by policymakers.

• If the 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. It comes down to every citizen expecting that our civic and political leaders have a broader vision of what is good for our communities and the courage to find innovative strategies to confront the challenges we face.

• The only thing that makes people and organizations great is their willingness to be not great along the way. The willingness to fail on the way to reaching a bigger goal is the untold secret of success. Our mantra should be “Believe in what you do – not in what you might accomplish”.

• If you cut through all 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.

What I learned from this review is that writing these posts helps me view our challenges in a more optimistic light because when we focus on how wrong things are we lose the power to act effectively. So I am going to act on the following list: (i) ensuring that service authorizations reflect the client’s choice; (ii) telling others why clients and communities we serve are better for our services being provided without TLDR syndrome; (iii) pursuing meaningful work options for clients; and (iv) setting time aside each day for personal reflection. I hope something in this editorial resonates with you for action. The picture included with this post is of myself and four clients that I have known for 33 years. I would like to think we have more than just a business relationship and that my effort is worthy of their trust.

JWB collegegrad

Virtual Institutions

As you read the following, I ask that you allow this “old dog” to use general concepts, outdated verbiage, and approximate timeframes in telling this story of how I came to work in the field of human services and how it relates to the issues we are facing at the legislature today.

In the winter of 1978, my friend John Selvog drove a bus route in St. Cloud, MN that transported children with “mental retardation” from their family homes to a segregated school and back. As Christmas approached John realized it was unlikely that these kids would see Santa at the mall like their peers. Together we convinced the Dayton’s Department Store to donate candy and smalls gifts for each of the kids and to loan us their Santa suit for a night of visits. With me suited up as Santa, John drove us to each of the kid’s homes where we delivered the gifts to the delight of each family and the kids got to hug Santa and whisper their gift wishes. Something resonated with me that evening and I dropped out of college for the spring semester so I could volunteer as a teacher’s assistant at the segregated school the kids attended.

Returning to St. Cloud State in the fall of 1979 I declared my major as a Recreation Therapist which required two more semesters and a 400 hour volunteer internship. Getting married in November of that year my internship options were limited as my wife Mary had a full-time job in St. Cloud that we needed until I graduated. I was fortunate to be accepted for an internship at Brainerd State Hospital and began in May of 1980 under the supervision of Blaine Church. At the time we only had one car which Mary needed for her job in St. Cloud. As a result, I hitch-hiked every Sunday afternoon from St. Cloud to Brainerd, lived in a basement classroom in building #7, and hitch-hiked back to St. Cloud every Friday afternoon for 10 weeks. Without a car, I literally lived and worked 24/7 in building #7 unless we took clients out into the community. From this experience I got a memorable lesson on the reality of “institutional retardation”.

JWB collegegrad
JWB’s College Grad Photo

I graduated in August of 1980 and we moved to the Twin Cities where I was hired as a Recreation Therapist at the Greenbrier Home in East St. Paul. After a few years in this position I switched to an administrative track and eventually became the Administrator in 1984. Greenbrier was an Intermediate Care Facility for Mental Retardation (ICF/MR) for 172 men, many of which attended Merrick, Inc. Despite the best of intentions, Brainerd State Hospital and Greenbrier Home were both institutions. In many cases institutions are good things in that they are an organization, establishment, foundation, society, or the like devoted to the promotion of a particular cause or program, especially one of public, educational, or charitable character. However, they are not good homes in any sense of the word.

In the early 1980’s Dr. Warren H. Bock was the interim Disability Services Director for the MN Department of Human Services (DHS) and hired Cindie Becker from Washington State for the sole purpose of getting waivered services approved in Minnesota. Together they submitted the federal application, wrote state statute, and issued requests for proposals to the provider community. After a federal ICF/MR audit, and realizing the future of waivered services, in collaboration with Ramsey County I led an effort to downsize Greenbrier by moving all of the residents into Supported Living Services (SLS) group homes. Concurrently, I formed a company called Focus Homes, Inc., that became an SLS provider to many of these men and eventually served more than 200 people in 65 homes throughout 12 counties. In 1990 I joined Dr. Bock in his consulting practice until I was hired as the Executive Director of Merrick, Inc., in 1998.

From my view, the primary objective of the “waiver” was to permit the state to offer more flexible services with almost a single requirement that it only had to cost less than the existing institutional option. For more than 25 years Minnesota has expanded its waiver options, reduced the use of institutional programs, and discharged nearly every citizen with a developmental or intellectual disability from the state hospital system. Unfortunately, for the past few years the Centers for Medicare & Medicaid Services (CMS) and DHS have been pushing to move from a social service to a medical service model; and the proposed Disability Waiver Rate System (DWRS) is just one element of this impending change. Having been part of the DWRS workgroup process since 2009, it is my feeling that the new rate frameworks will result in the waiver becoming an institutional service. Apparently we believe that somehow we can annually assess a client’s needs across the domains of communication, behavior, medical, & mental health to prescribe supports needed in the residential, day, and transportation programs. Like you, I have had to fill out those health history questionnaires whenever I see a new clinician and no matter the length or specificity they never really capture my entire life. How is it we can precisely capture the often complex needs of the folks we serve and when was the last time you heard a client say they need a 1:6 staff to client ratio? Moreover, providers will not be able to offer services for less having to accept the rate calculated. Remember George Corporal and the Glass Service Company? When insurance companies decided to pay a flat rate for glass replacement, George offered a box of steaks to customers because he couldn’t compete on price. If we cannot negotiate our rates will we have to offer extras like movie tickets, dinner coupons, and event passes to attract clients to our programs?

I agreed to participate on the DWRS workgroups hoping that I could help influence a good outcome. That did not happen in my opinion. What is being proposed is based on a myth that recipients have a condition, on a finite list, that can be treated with a prescribed course of action, in the same manner by all providers, at a known cost, and the person will get what they need for a basic quality life. It is medical model that just won’t work and if the consequences weren’t so serious it would be silly. DHS reports that in SFY ’10 it spent approximately $160 million on DT&H program and transportation services for almost 16,000 recipients. According to Bert Blyleven’s California math that is $10,000 per client, about $42 a day, or $7 an hour for 6 hours of program services including transportation to and from the program. So, using the bell curve let’s start with $42 as the median per diem, adjust up/down by the standard deviations until the budget is spent, and then allocate that amount to clients in an annual budget to determine what supports they want to purchase so they can discuss options with a number of providers. This won’t happen because DHS believes CMS won’t allow waivers to be this individual and flexible. Still, policymakers need to remember that every penny of the federal financial participation given to Minnesota comes from taxes our citizens pay to the federal government and someone with State authority needs to have the moxie to say enough is enough and we are going to do what is right and practical. We are about to implement a rate framework that is a virtual checklist institutionalizing how funding is approved and we should know by now that funding has everything to do with the flexibility of services. At this point I don’t think we can stop the rate framework train from leaving the station. However, over the next three to four years of implementation we can push back to ensure that the assessment used to inform the rate framework is a person-centered process and work with advocates to get the funding in the hands of the recipients so they can decide both the services and providers they want.

Expecting More

EXPECTING MORE

The 2013 Legislative Session began on Tuesday, January 8. It is the first year of the biennium which means the primary focus will be setting the biennial budget. The November election brought big changes in Minnesota state government. For the first time in 22 years, the Senate, House, and Governor’s office will all be controlled by the DFL. The election also brought 65 newly elected members of which nineteen have previously served in the legislature. The DFL has targeted balancing the budget, jobs creation, tax reform, and education as their top priorities. In the area of health care – health reform and adopting legislation to implement the health insurance exchange will be at the top of the list.

To better understand the legislative issues from the disability community perspective I reviewed the websites for The Arc of MN, Association of MN Counties, Association for Residential Resources in MN, Care Providers of MN, MN Consortium for Citizens with Disabilities, MN Council of Nonprofits; and the MN Day Activity Center Association. Some common themes that emerged include:

• Support a balanced approach to the 2014-2015 budget;
• Enact a Cost of Living Adjustment (COLA) also known as a rate increase;
• Fund the health insurance exchange requirements and other Affordable Care Act mandates;
• Monitor Medicaid Reform initiatives coming from the Department of Human Services;
• Modernize and strengthen Minnesota’s election system while increasing access to voting;
• Ensure rate frameworks preserve the ability of organizations to provide critical disability services; and
• Promote funding strategies that assure people with disabilities live at the maximum level of independence.

The important issues that Merrick will be tracking this session include the following:

1. Encourage stakeholders to: (i) have the definition of DT&H services updated to reflect current practices and deemed an “essential service” (thereby mandated for payment during a government shutdown); and (ii) reestablish rules prohibiting any licensed provider from having 24-hour control of a vulnerable adult (sunshine rule) as part of finalizing the new licensing rule 245D.

2. Support MnDACA’s efforts to: (i) work with DHS on the final values for the new rate frameworks and implementation plan; (ii) repeal the 1.67% rate cut scheduled for 7/1/13 – 12/31/13 because CMS did not approve the state’s early implementation of the new nursing facility level of care (NFLOC) criteria; and (iii) eliminate the $2.55 “family out-of-pocket” fee being applied to MA providers.

3. Revise MS 174.30 (Subd 1)(c) to exclude vendors from STS regulations that exclusively provides transportation services to individuals enrolled in licensed day programs, including adult day care, family adult day care, day treatment and habilitation, prevocational services, and structured day services; and transports 15 or fewer persons, including passengers and the driver.

4. Oppose any legislation that does not affirm the service recipient’s choice as primary and/or restricts voting rights for citizens with a disability.

With the change in party control there has been a complete changeover in leadership. The Senate DFL has elected Senator Tom Bakk as the Majority Leader and he has served previously as the Minority Leader. Senator David Hann was elected as the Minority Leader, previously served as the Health and Human Services Finance chair, and is a friend to the disability community. Senator Tony Lourey will chair the Health and Human Services Finance Committee and Senator Kathy Sheran will chair the policy committee. Both are familiar with disability issues. In the House, Representative Paul Thissen was elected as Speaker and previously chaired the Health Policy committee. Representative Erin Murphy was elected Majority Leader and has served on the Health and Human Services Committee. Finally, the House Republicans have elected Representative Kurt Daudt as the Minority Leader and this is only his second term. Representative Tom Huntley will chair the House Health and Human Services Finance Committee and Representative Tina Liebling will chair the Health Policy Committee.

The November forecast projected another deficit of $1.1 billion for the coming biennium of FY2014-15. However, the current biennium ended with a positive balance of $1.3 billion which under current law was used to buy back the school payment shift. The DFL leadership and Governor Dayton are calling for a balanced approach in dealing with the deficit, meaning both additional revenue and budget cuts. The Governor has said that he will push his proposal to tax the top 2% of income earners. The Legislature has not totally embraced that proposal and has indicated an interest in tax reform that might close loopholes and/or expand the sales tax to cover more items, (i.e. clothing). The talk of additional revenue has triggered a lot of “pent up” demand for increased spending so DFL legislators are trying to lower expectations. That “pent up” demand is being felt by disability providers as rates have been cut to balance the budget. In fact, there has not been a COLA (cost of living adjustment) since 2008 and many services have had rates cut since then to balance the budget.

As evidenced by the recent election, citizens have grown weary of partisan dogma intending to restrict personal choice and political posturing on issues important to the wellbeing of our communities. It’s clear that our political and civic leaders are failing us – and it is our fault. As Sean Kershaw, Executive Director of the Citizens League, states in his recent Minnpost article – “I’m also tired of the pity-card being played by people like me who know better: who have enough time and energy and resources around them to do something differently; who recognize the silliness of whining and civic victimhood; and who realize that our leadership is a reflection of all of us and of a civic culture that has become too passive and a political culture that has become too toxic”. He goes on to discuss their new Quantum Civics program that sounds very intriguing and something to consider. Still it comes down to every citizen expecting that our civic and political leaders have a broader vision of what is good for our communities and the courage to find innovative strategies to confront the challenges we face. We have enough money, compassion, and intelligence to make Minnesota a better place for its citizens and we need to hold legislators in the 2013 session accountable for making progress to that end.

JWB at Gala

Uncomfortable

UNCOMFORTABLE

For many years, only five percent of the clients we served were over the age of 55 whereas today that number is 21% and we project that number to grow to 34% within the next five to 10 years. We also realized a need for a distinct service option for adults with intellectual or developmental disabilities (I/DD) that were experiencing stage 1 or 2 Alzheimer’s/dementia. Early research indicates that 100% of adults with Down syndrome will eventually experience signs of Alzheimer’s/dementia and that they may experience an early onset in their mid-thirties or forties. Of the 65 clients with Down syndrome we currently serve, 18 have already been diagnosed with Alzheimer’s/dementia. Recent studies have also suggested a strong correlation between a long history of psychotropic medications – a common occurrence among older adults with I/DD – and early onset of Alzheimer’s/dementia. It also seems that clients that lived in institutions for decades are similarly at higher risk than their aging peers for early onset Alzheimer’s/dementia due to the lack of positive experiences – personal relationships, photographs, pleasant memories – that would otherwise help to slow the onset of the disease.

For the last five years, we have observed a rate of newly diagnosed cases of Alzheimer’s/dementia of approximately one to three cases per year; and, over the past year alone, the rate of new diagnoses here has tripled to one case every six weeks or eight to nine new diagnoses per year. While there are both similarities and differences on how Alzheimer’s/dementia impacts persons with I/DD and their nondisabled peer group, one fact became clear to us – the steady growth in new diagnoses demanded programming to serve the unique characteristics of this population. So, on July 30, 2012, Merrick, Inc., with support from Ramsey County Community Human Services, opened its Adult Day and Memory Care Service program in North St. Paul to serve 40 clients.

JWB at Gala
JWB learning how to relax
Since then I have visited the program many times and always with a purpose until the other day when I went to simply observe. As usual I found the space clean, comfortable, and cozy with clients and staff loosely engaged in orchestrated chaos. On this particular day Halloween decorations were in full display and clients were involved in either a light exercise program or working on iPads. I watched as a client poured his own cup of coffee and others came in from the bus to greet their friends. It all seemed so natural and harmonious – so why was I so damn uncomfortable? Mulling over this feeling for a few days I came away with the following two reasons.

• First, I’ve known many of these clients for more than decade, some for 30 years, and to see their mental and physical health diminish is both sad and a reminder of my own fast-approaching future.

• Second, and to me most interesting, I was bothered that no one was working. Really bothered actually. In fact, everything they did had at its core an element of fun which is not found in the federal/state licensing regulations. I wondered would politicians, policymakers, and taxpayers really understand why funding this program was important.

Unfortunately, as funding is cut, I fear that this age group of citizens with I/DD will be among the first to lose services so I decided to try to develop some reasons why this type of program is so important.

1. Elderly people with I/DD, like their non-disabled peers, need and want activities that give them routines and enrich their daily lives. Otherwise, they would spend another 25 hours a week in their home with minimal support and very little social/community interactions. Would we want to stay in our homes 24/7?

2. Staying in the group home is not free as residential providers would need to schedule staff and plan for other costs. So, if these 25 hours are going to cost the taxpayer something, shouldn’t it be for life enrichment activities rather than custodial care?

3. Shouldn’t we value fun for people in the later stages of life? Isn’t fun and enjoyment something we hope for in our own retirement?

On November 13th we will be hosting an open house and ribbon cutting ceremony to celebrate the opening of this program in our new community and I feel much better prepared to share these thoughts with our guests. Nevertheless, I still have something to learn from these folks about what life enrichment and social opportunities really mean if I ever hope to enjoy my own retirement.

Response to Real Jobs

RESPONSE TO REAL JOBS

Jon Alexander is a respected colleague who sometimes challenges my messages. He is also the CEO of Kaposia, a supported employment and day training and habilitation provider, a co-manager of the Minnesota Employment Policy Initiative (MEPI) project, and a founding member of the MN Employment First Coalition. In the interest of full discussions leading to better outcomes, I invited him to share his thoughts on competitive employment through the Bark’s Bytes channel.

From Jon Alexander:

In 2009 and 2010, the MEPI conducted a series of listening sessions across disability groups to gather information focusing on the question, “What will it take to double the competitive employment of people with disabilities?” Over 200 individuals with disabilities, professionals, family members, and advocates participated. A series of policy briefs related to employment for people with intellectual or developmental disabilities, autism, physical disabilities, brain injuries, mental illness, deaf-blindness, or hearing loss, as well as youth in transition were presented.These policies briefs were then summarized in a final report. In the reports, the term “real jobs” was used in only one recommendation.

This recommendation pertained to students still attending school and is included below. Participants in the listening sessions used “real jobs for real pay” to clarify that they were recommending jobs similar to those secured by students without disabilities, not the types of “work experiences” available to students with disabilities as part of their school program. “Work experiences” were viewed as being developed by school personnel with the job belonging to the school program, not the individual. Listening session participants felt it was important for students with disabilities to have their own job prior to graduation to better inform their choice of employment upon leaving school.

Recommendation from one of the policy briefs: Ensure students with disabilities have real jobs for real pay while they are still attending school. There is no substitute for having a real job. Research on transition has documented that a positive correlation exists between the number of paid jobs held by youth with disabilities and their future competitive employment outcomes. A job is a powerful learning experience for a young person. It is the best way to learn about work and to start building a resume for future jobs. Students with more significant disabilities often have “work experiences” which are often unpaid, artificially created experiences that take place within the school setting or in groups in the community, rather than having real jobs while they are in school like other teenagers. While there is value in work experiences, they provide a limited opportunity for learning. There is usually no interview or selection process. Expectations are not the same as working directly for an employer for wages. In many work experiences, students are isolated from the paid workforce at the place of business, preventing them from fully experiencing the social aspects of a job. As a result, they do not learn some of the “soft” skills vital to successful employment or the direct connection and rewards of paid employment and work.

In his blog post titled, A Real Job, JWB connects the term “real jobs” with MEPI’s definition of competitive employment. MEPI does define the term “competitive employment” as “work in fully integrated settings, with or without supports, paid at prevailing wages.” We used this term because defining “employment” alone is a daunting task that is probably impossible given the differences of opinion on the issue as noted in a quote from the beginning of JWB’s post. We chose to emphasize “competitive employment” as it is the most consistently defined term and goal in statute and policy at both the state and federal level. We also typically include self-employment as part of our definition, though the quote used did not include this option.

So what’s my point?

I agree the term “real job” is one which can create at best, confusion and at worst, hard feelings. This term is used by many critics of our system who would like to see people move from low paying jobs where they work on a limited number of tasks and are paid directly by a provider into ones that are more typical of the general population, namely competitive employment. The MEPI reports however did not intend to use the term “real jobs” in the way JWB describes. In fact, the MEPI team worked hard to communicate its findings and recommendations in ways that attracted not repelled potential collaborators to its long range goal—increasing the number of Minnesotans who participate in the community workforce.

If JWB had asked whether or not MEPI established a preference of “competitive employment” to other types of employment, the answer is “yes.” We view employment that focuses on individual skills, offers market rate pay and benefits, encourages higher levels of integration, and offers capacities for employers to supervise and support their employee naturally as a preferred option to traditional practices. But valuing naturally supported competitive employment over center-based employment or other community employment like work crews or enclaves, does not equate to saying those options are not “real.”

Finally, I would like to add that there is a great deal of tension between differing sides in the on-going debate about how to improve the outcomes realized by the individuals who receive services from organizations like Merrick or Kaposia. Both sides need to do a better job of listening and communicating without the use of terms that create more rigidity in our positions. JWB and I met and discussed how we might do this on a personal level in the hopes that we can be role models to our colleagues on both sides of this debate. I’d like to thank him for this opportunity to respond to his latest editorial. ~ Jon Alexander

A Real Job

A REAL JOB

In July 2012 someone in our field was quoted in the local paper saying that the work clients at Merrick do and get paid for is “like an activity with an allowance” and “I don’t consider that work”. This person is also a constant voice within the Minnesota Employment Policy Initiative (MEPI). Visiting the MEPI website (http://www.mn-epi.org/first/index.asp) you can find their January 2012 policy statement that “Employment First is the vision of making integrated competitive employment (with or without supports) the first priority and preferred outcome of Minnesotans with disabilities”. In MEPI’s 2011 report “Policy Brief on Employment of Minnesotans With Intellectual and Developmental Disabilities”, they define competitive employment as “work in fully integrated settings, with or without supports, at prevailing wages.” From these two statements I understand MEPI to assert that a job must be both fully integrated and paid at a prevailing wage to be “real”.

Let’s examine their first assertion that a job must be fully integrated to be “real”. Not only do I struggle with their undefined use of the phrase “fully integrated” (see https://www.merrickinc.org/barks-bytes/247-numbers.html), I am perplexed by the notion that where one works can make a job any more or less real. What of an Internet entrepreneur working from a home office or a professional golfer that earns their money on 18 beautifully landscaped holes? As Jim Chicone said in his 9/20/12 Thoughts on Thursday’s Facebook post “While individuals, groups, and society at-large can place a higher value on some features of a job over other features, a job is a job; it is what it is”.

Their second assertion that to be “real” a job has to be paid at a prevailing wage is even less true than their first assertion. What of an artist that may work months or years on a sculpture only to sell it for a few hundred dollars? Or a real estate agent that works on a full commission? While what one gets paid certainly influences what one can buy, if a person performs an activity for any amount of compensation don’t they have the right to call it a real job?

Consider Luke Haley (http://www.twincities.com/ci_21338651) who takes an art class three times a week and volunteers at Trinity Lutheran Church, Feed My Starving Children, and Good Samaritan Nursing Home. In the article his mom reflects on the unique value he brings to the world when she says “It’s not easy to show that kind of generosity to your fellow humankind, but he does it boldly, and he does it with passion, and he never gets discouraged. He’s been such a teacher for me.” From the article the reader certainly gets the impression that the organizations that Luke interacts with count on him to greet visitors, package food, and deliver the mail – tasks that need to be done. Why does MEPI consider the wage the only factor in valuing the work being done and ignore Luke’s satisfaction and the gratitude of those he serves.

At Merrick we have narrowed our definition of meaningful work as having the following four criteria:
• a preferred task;
• in a setting of choice;
• with dependable hours; and
• for a satisfactory wage.

The beauty of this definition is that every client gets to define each of those four criteria for themselves and proudly call it their real job. It even works for Luke. What the people at MEPI fail to acknowledge is that, while a job can certainly enhance one’s life, it does not define it like choice. If government, providers, and advocates can work together to meet the four criteria above for citizens with disabilities we can stop wasting our energy on irrelevant employment policy and legislation. Finally, for the people at MEPI, what makes your job so “real”? If it is just pay and spending 40 hours in your definition of an integrated workplace – you might be missing the bigger picture and need to have a conversation with Luke.