Re-Imagining Our Community
With the publication of the Quality Measures 2005®, CQL has shifted the locus of quality measurement from the program and organization to the community. At the end of the last century, quality was typically defined as compliance with organizational process and program standards. Quality assurance rested on the demonstration of conformity with program, funding, or governmental requirements. CQL has moved the discussion to quality of life in the context of communities.
But communities are often changing, unpredictable, and torn in different directions. Communities are at times overwhelmed by challenges and the necessity of sorting out priorities. Making the case for progressive policy and practice for people with intellectual and developmental disabilities can be overshadowed by other worthy causes.
We have discovered that making change – for either individuals with disabilities or the organizations that support them – is often too difficult to do by ourselves. We need allies.
Fifteen years of CQL data from the Personal Outcome Measures® indicate that important outcomes in people’s lives result from the cooperative and collective work of family, friends, volunteers, and support staff. People and communities make outcomes happen. Programs don’t.
1. Today’s challenges (finding money, juggling priorities, letting go of old models and mental silos) seem more complex and confusing than past challenges. How we (re)define the problem leads us to new alternatives.
Consensus and common direction are often elusive, even in the field of Intellectual and Developmental Disabilities (IDD). Policy choices seem less clear and more complicated that at the end of the last century.
Consider the following:
- While the era of the large public institution may be over, well-intentioned groups will advocate for, and build, large congregate residential and day programs.
Is it because of safety concerns, because communities are not really receptive, or because of our lack of leadership and courage?
- More people now receive support services while living at home than in traditional service settings. Yet, waiting lists continue to grow.
Are we out of money, out of sight and/or out of mind, or out of energy?
- Competition for federal and state financial support will become increasingly difficult as the budget deficit soars, the baby boomers retire, and global growth pushes commodity prices upward.
Who are our allies in this dilemma? What might we do in common that we cannot achieve alone?
2. Today’s challenges arise out of our past successes, the unintended consequences of our work, and new circumstances. The IDD community is beginning to recognize a new set of challenges.
Consider the following leadership groups in the IDD community:
At an individual level, self-advocates define and direct their own supports. At an organizational or association level, self-advocates build and exercise collective power and responsibility. Self-advocates need to develop an effective national presence with enough power and responsibility to represent its constituency and to also negotiate and work with its allies.
People with IDD are living at home. The demise of the public institution, three decades of public education opportunities, continued waiting lists, and the HCBS waiver supports are increasing the focus on the family. Yet families often have limited resources, both human and financial, for these new roles. In addition, families recognize the difficulty of maintaining balanced relationships with adult children living at home.
Current providers include both traditional comprehensive service providers and smaller support entities that offer fiscal, planning, coordination, or support services. The range of service and support models has greatly increased over the past decade. Many of the traditional provider roles and responsibilities are now exercised by independent agencies, and contractual professionals including direct support workers. Future provider organizations may resemble staffing organizations and co-ops that coordinate personnel assignment with self-advocates and/or their families.
Direct Support Professionals (DSPs).
As baby boomers age and demand more supports in home settings from individuals they themselves screen and hire, the role clarity and demand for DSPs will increase. This will add demand for, and legitimacy to, DSPs in the field of intellectual and developmental disabilities. Direct support professionals as a national movement will be challenged by an increase in expectations, demand from different sectors, increasing but insufficient wages, and increasing diversity in the work force. Immigration will increase the diversity and numbers of the DSP workforce and the complexity of building social networks in diverse and complex communities.
Other Professional Supports.
Personnel in the field of health care, accounting, social welfare, gerontology, real estate, and human services are providing supports to people with intellectual and developmental disabilities either directly, through community networks or through support organizations. The door to support professionals may open through specialized IDD networks or through generic community resources.
3. The IDD community must become “Uncommon” – take bold action, build broader alliances, and speak with a united voice when it matters most.
The IDD community supports an ongoing dialogue within each of our sectors and across the field of IDD. Our challenge is to move beyond a single perspective whether it be that of a self-advocate or a support professional. We need to build participatory dialogue and connections within the IDD community and between and among citizens from all communities.
James Gardner, PhD
Former President and CEO, CQL