From everything I have heard and read, citizens of Minnesota are unhappy with the continuing degradation of the quality of life in our State.  Yet the Governor, and some legislators, seem intent on funding reductions to balance the State’s budget in spite of the negative consequences that most Minnesotans find objectionable.  It really is time for each of us to acknowledge that more funding cuts crosses the “line in the sand” and we need to send a message to the 2010 Legislature that enough-is-enough.  It is time to find more revenue and make funding reductions with a scalpel and not an axe; and to realize that spending on health and human services not only meets our social contract to care for our most vulnerable citizens – it is also a huge investment in our State’s economy.

The following is Merrick’s 2010 Legislative Agenda approved by our Board of Trustees on March 10, 2010, and some suggestions on how to take action.

No further reduction in Medicaid (MA) or Children’s and Community Service Act (CCSA) rates.  No further limits on waiver slots.  Restore or sustain services as much as possible.

The Governor’s supplemental budget recommendation proposes a 2.5% rate reduction for home and community based waiver programs, home care services such as personal care, nursing facilities, ICF/MR homes, and continuing care grants effective July 1, 2010 on top of the 2.58% enacted last year.  Make sure legislators understand what DT&H programs do and how additional cuts will negatively impact the people we serve.  Urge a balanced approach to balancing the state budget that includes fair and sensible cuts that requires all Minnesotans to share the burden.  Make sure that $81 million “claw back” from federal MA spending goes to support human service expenses and not other operating expenses.  Support increases in revenues that will allow us to continue to invest wisely in the future of Minnesota and to fund the priorities that have made Minnesota a strong and vibrant state and provides opportunity for all Minnesotans.  Oppose cuts that put our most vulnerable citizens at further risk or further erode their ability to live independently as valued members of the community.  Cuts in human service funding are a form of taxation that targets our most vulnerable citizens.  Instead we need innovation that will provide sustainable solutions that:

Expand systems and supports that give clients greater control over their funding, staffing, and living arrangements.
Focus on the participation and values of the person with a disability and work to ensure quality cost effective supports.
 

Use current regulatory reform agenda, prompted by federal oversight, to redesign state and local government agencies administering MA, waiver, and related programs; and redirect more resources directly to consumers.

In the face of continued fiscal constraints, encourage legislators to push the Department of Human Services (DHS) to press for comprehensive reorganization that will reduce administrative costs without jeopardizing appropriate oversight and free-up resources for direct service.  Where are the cuts in government overhead and administration?

Ramsey County must ensure an appropriate funding level for adequate day services chosen by the individual which meet their needs as stated in their individual service plan.  CCSA should be amended to require the county to fund day services unless it can show a compelling reason, other than the availability of CCSA funds, to deny the provision of these services.

Encourage more employment opportunities by state government

Our industry trade associations (MnDACA, MHC and MACRO) are pursuing legislation to require that the state award more contracts to people with disabilities for digital imaging and other services.  State government needs to walk its own talk and we need opportunities to generate non-government revenue.

Insurance reform for transport

Representative Gardner has authored H.F. 298 and Senator Dibble has authored the companion bill S.F. 2814 to encourage more efficient and environmentally responsible transportation.  Current insurance underwriting, policies, and practices create barriers for efficient transportation of persons with disabilities, particularly adults with developmental disabilities served by DT&H providers.  Support legislation that will remove those barriers.

Quality Assurance and other Statewide Reform Initiatives

Monitor closely to ensure that initiatives deliver desired results, are compliant, responsive to the needs of clients, and fair to providers.

Maintain/reinstate sunshine laws

Ensuring the quality of care and protecting the safety of individuals with disabilities can best be accomplished by limiting 24-hour control of an individual by government and other service providers.  The quality of life for individuals with disabilities is enhanced by having multiple individuals or entities involved in the life of the individual.  It is preferable that the individual leave their residential site for day services of their choice unless documented medical conditions preclude it, the individual has chosen to have a DT&H provider provide services in their own home or residence, or if the individual is retired from work.

Require consistent annual reporting of statewide goals and benchmarks for services and supports not just spending

DT&H statewide survey of wages and hours and other relevant planning information has not been conducted since 2005 and even that survey had inconsistencies in data reported.  More current reports (MN DHS CCA 2007 and Minnesota State Profile 2009 both of long term service system) focus on spending only, not other outcomes like employment, types of employment, hours worked, wages and income earned, and supports required for all of the above.  Create and support initiatives that will demand and ensure regular publication of good data to make good decisions.  Support legislation that requires establishing baselines, goals, outcomes, and measurable benchmarks, so we can determine the progress and impact of our investment in human services, as we work to ensure that people with disabilities have an opportunity to live, learn, and work as independently as possible in their communities.

How can I influence the public policy debate?

As a voter, taxpayer, and person directly impacted by these public policy decisions, your voice is very powerful and the one that has the most credibility with legislators.  Your voice becomes even more powerful when your legislator hears from multiple constituents, each with a unique story or personal touch, but all with a common theme that influences their vote on a matter.  Most people don’t take the time to share their concerns with their legislators, and those that do get heard, particularly when the stories are personal, to the point and heartfelt.

Who represents me and how do I locate my legislators?

Minnesota has great resources to help you identify your legislators.  Go on line and either click on the following link or copy it into your internet browser – http://www.gis.leg.mn/mapserver/districts/

This is the District Finder.  Enter your street address, city, state, and zip code and click search.  The search engine will identify your Minnesota State Representative and State Senator as well as your Federal Congressional Representative and both U.S. Senators for Minnesota.  Now you are ready to take action!

What are some of the key messages I might want to share with my legislators?

No more budget cuts.  Funding for day and employment services is an investment in our community – money well spent that pays the following dividends and must continue:

Meaningful employment, vocational support, and other life enrichment activities that increases independence and self sufficiency, provides an improved sense of self worth, allows persons to make choices about and improve their quality of life, and establishes an important link for a person’s social and support network.
Employing persons with developmental disabilities taps an underutilized labor pool and fosters employment among a segment of the population with the highest rate of unemployment and underemployment.  Our clients rely on our support to obtain and maintain employment.  These services promote diversity, inclusion, and social responsibility in the workplace.
We are an important link in the transportation network for the elderly and persons with disabilities.
These services have a positive ripple effect in the economy through employment of staff and clients alike and the resulting benefits to families and society of the money earned, saved and spent, taxes paid, and more costly welfare expenses avoided.
 

Other tips to get your message heard:

Pick your favorite method of communication – the one most comfortable for you.  Send a letter typed on the computer or handwritten (as long as legible) or send an email.  You can also make a phone call or schedule a personal visit.  Prepare a script to use and even leave behind.
Use your personal stationary or blank paper and include your name and home address (include your telephone number and email address if you want to be contacted that way).  Introduce yourself and why you are interested in the issue.  Only discuss one issue or bill (cite the bill number) per letter.
Use your own words.  The fact that you took the time to craft a personal message is what makes your communication so powerful.  Your tone should be sincere and polite.  Guard against being whiny or aggressive.  State how the issue will impact the clients and/or yourself personally.  Give a personal story about how the legislation will affect you.
Keep it brief and polite – one page if possible.  Identify why you are writing in the heading or first sentence.  Tell the legislator what specifically you want them to do.  Thank the legislator for considering your position, and if desired, request a reply.
Encourage your co workers, family, and friends to do the same.  We have a parent who shared his son’s story in a letter to his church.  Several members were so touched that they too wrote to their legislators protesting further budget cuts to human services.
 

If you care about the quality of life in Minnesota, or you are just simply tired of the political wrangling at the Legislature, it is time to let the politicians know that as a voter your heels are against the line in the sand and you are counting on them to do the right thing for our most vulnerable citizens.

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.