Big Challenges, Tremendous Opportunities, No Excuses
Charles Dickens began his classic Tale of Two Cities with:
“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness…”
A recession looms, the elections are energizing the electorate. We’re worried, but hopeful.
In our work, we find the same cross currents of challenges and opportunities. People with disabilities want a say in determining what happens in their lives, but to a large degree real self-determination is grounded in limited demonstration projects. Funding is not really following “the person” as it is still anchored around the traditional provider.
Person-centered quality of life outcomes, Community Life® design and development, and support network management and accreditation offer new alternatives for public sector planning and control of both quality and cost. But competition over national resources, projected obligations for social security and health care, and a concern over national deficits threaten our ability to deliver on past promises and seize new opportunities.
Simple Axioms – Quality Starts Here
So, how does CQL stay focused on its continued role of defining, measuring and improving quality of service and quality of life for people with intellectual and developmental disabilities during uncertain times?
Four axioms guide deliberation and action.
- We need to stay grounded in person-centered quality of life. Services and supports are meaningful only when they facilitate personal quality of life. Our thinking and deliberation must begin with, and be grounded by, dialogue and interaction with people with intellectual and developmental disabilities.
- We need data and examination of data to demonstrate that our policy and practice produces quality of life outcomes. We need to know what works, what makes a difference, and why.
- But, data and data analysis are not quality. Good values, great intentions, sincere services and lots of data don’t matter if our execution fails. At some point we’ve got to stop measuring and start improving. We aren’t going to measure our way to quality. We’ve got to work our way to quality. Measurement is an integral part of quality improvement, but claiming quality by collecting data without making change is a masterful exercise in misdirection – a basic element for all great magic tricks. It’s an illusion.
- We’ve got to eliminate policy, practice and procrastination that maintain antiquated services and systems of service. Newt Gingrich remarked in a 2007 speech at Cooper Union that, “real change…requires real change.” We’ve got to stop thinking that more demonstration grants will change culture and structure. We need to summon political energy and demand real change.
Staying Focused – Getting from Here to There
Confronting our challenges and taking advantage of our opportunities requires focus. Time, money and leadership are in short supply; we need to concentrate resources and action strategies. CQL’s focus is on long-term strategies for increased accountability and quality in services and supports that facilitate personal quality of life within a community context.
The structure of our service and support network is changing. Traditional comprehensive service organizations are under pressure to individualize supports around people’s life priorities rather than options within programs and services. Following in the mass production techniques of Italian fashion conglomerates and Japanese automobile makes, we are searching for universal customization in disability services. How do we individualize for everyone?
Moving beyond pilot projects and demonstration grants means bringing our models and practices to scale and making them work across whole states. It’s no longer good enough to point to the self-determination projects in a state and repeat the success stories of the same small number of people. We’ve got to demonstrate that our promising practices and evidence-based models work throughout the community – for everyone. Important segments of our professional community and general public lack confidence that we can marshal community resolve and resources to support all people.
Maryland’s Governor recently announced the closing of the Rosewood Center in Baltimore County, Maryland. A united and determined Maryland disability community won out in this long-term campaign. Yet, Dan Rodricks, a columnist for the Baltimore Sun wrote in a January column about “Tony”. “Tony” was recently dropped off (dumped) at a building at Rosewood with an alleged note stating he was homeless and unable to care for himself – and his mother was dying of heart failure and in a coma. Although the story was not confirmed due to confidentiality problems, Rodricks concluded “the Tony story is not hard to believe.”
Our challenges and opportunities are large and complex. Politics are local; policies are increasingly focused on local and state government, whereas economic and technological change is global. We need to organize and develop networks at many different levels. CQL is proud to sponsor the National Leadership Consortium at the University of Delaware. We continue to play a leading role in the Alliance for Full Participation. CQL has international partners on three continents. In addition, CQL is working now to develop leadership during the next five years of transition in disability services personnel. At the same time we’re developing new applications and materials for our Quality Measures 2005®, we’re beginning a dialogue about quality in 2011-2015.
Roadmaps and GPS systems won’t work too well during, and in the aftermath of, earthquakes. Our grounding in legacy-based models of accountability, quality assurance, and monitoring systems are breaking up. A new pattern of decision-making, accountability and responsibility is emerging. People with disabilities, their families, fiscal intermediaries, “non-traditional” providers and new community alliances are offering alternatives to traditional service systems.
Yet the traditional standards and methods associated with procedural compliance and documentation are still in place. They, by themselves, are insufficient to address the variables that impact quality supports and quality of life for people. At the same time, we have not yet succeeded in implementing system-wide quality assessment and improvement methodologies grounded in person-centered assurances and quality of life assessment.
Conclusion – Are We There Yet?
As the current generation of leadership in this field of human services and intellectual disabilities contemplates retirement, we need to pass the baton to the next generation. We need to pass on uncompromising values, the skills and management savvy to make change, and a huge capacity for self-reflection to understand when we ourselves become barriers to change.
James Gardner, Ph.D.
Former President and CEO, CQL