Based on the collective input of the different groups at the DD Network’s October 30, 2008 symposium, the following principals were identified as central to the concept of “aging in place for people with disabilities”:

• Individual planning.   Demographic analysis tells us that the number of people with long-standing disabilities who are aging is rapidly growing.  While we must prepare for the coming surge, we cannot lose sight of the fact that these people are individual human beings. Indeed, the whole point of “aging in place” is to respect, and to enable people to retain the essence of who they are and what their lives are all about.  Planning for people according to diagnostic categories or age ranges tends to obscure the importance of individual histories, personal attributes and unique human identities.  Accordingly, we need to develop an array of flexible support options and safeguards that recognize the paramount importance the unique identities, needs and contributions of particular, individual people. 

• Continuity of personal relationships.  Personal relationships lend richness and purpose to our lives, contribute to our sense of identity and keep us connected both with the wider world and with our own inner selves.  Maintaining our relationships with family members, neighbors and friends also helps us to deal with challenges and offers prospects for genuine help when we need it; losing those relationships can leave us adrift and quite vulnerable.  

• Continuity of community.  Just as maintaining personal relationships helps keep us oriented, maintaining connections with particular places and communities contributes a sense of belonging.  While we might not always be able to, or even want to live in the same place at all times in our lives, it is far easier to maintain a sense of ourselves if we can sustain our presence in the particular community we authentically call “home.”

• Positive vision for aging.  Even as more of us are growing older, we live in a culture that increasingly values the characteristics of youth: speed, strength, agility, hard-driving intensity, material acquisition and limitless prospects for achievement.  We are not much attuned to potential contributions from people who, because of disability or age (or both), do not manifest those characteristics.  Rather than seeing older people simply as objects of care, we need to recognize and find ways to celebrate their experience and contributions.  This is especially important for people with long-standing disabilities, as they are doubly at risk of being devalued and disregarded. 

• Integrating with generic supports.  Disability-specific services should not re-invent the wheel.  To the maximum extent possible, strategies should be pursued to integrate disability services with community supports for all people who are aging.

 

1.   Develop Coherent State Policy.  This means that State policymakers, service systems and regulatory agencies would explicitly embrace the goal of supporting people with disabilities to age in place, and would align resources and practices accordingly.  Specific activities would include raising and discussing this issue at committees and forums (e.g. Long Term Care planning groups, Commission on Aging, Council on Developmental Services); hosting a meeting with state agency administrators; and preparing and equipping small teams (including affected constituents) that would approach particular legislators and agency officials.

2.   Workforce Development.  Current difficulties obtaining and retaining qualified individuals to provide in-home supports (e.g. home health nurses and aides, PCAs, etc.) are well known.   We need to develop and pursue long term strategies to ensure that current shortages are addressed and future needs will be met.  The “generic” home care sector, the disabilities service systems, and the State’s designated workforce development entities (Workforce Competitiveness Board, Legislative Higher Ed & Workforce Development Committee) need to be systematically approached and involved in this effort.  

3.   Improve Coordination and Continuity of Health Care.   Health care needs often increase as we age, requiring more frequent contacts with medical providers.  In addition to the logistical problems inherent in arranging for transportation to and from numerous appointments, we must also spend more time and effort navigating through scheduling, insurance and reimbursement mazes, and, in the process, encounter more “Catch-22” rules.  While advances in medical knowledge and technology have greatly contributed to increases in longevity, the fragmentation with which medical services are delivered exacerbates problems.  Discontinuities and communications gaps between medical specialists and between hospitals, long term care facilities and community providers can even prove deadly.  Filling the gaps and overcoming the barriers that people frequently encounter in the health care world is an essential component in any strategy to promote options for aging in place.  Provider organizations need to develop strategies to guide clients through this maze, and service systems will need to fund those efforts.

4.   Promote Universal Access and Supports.  As we age, our ability to get around in the built world may diminish.  Sometimes, too, we begin to need more frequent assistance than we used to.  Too often people are removed from their homes and communities and placed into institutional settings because of inflexible program models and architectural barriers.  To better support people aging in place, human service systems should embrace “Universal Design” principles – both with respect to facilities and program infrastructure. 

 

 

• Individual planning
• Continuity of personal relationships
• Continuity of community
• Positive vision for aging
• Integration with generic supports 

 

 

1. Develop Coherent State Policy

 

2. Workforce Development

 

3. Improve Coordination and Continuity of Health Care

 

4. Promote Universal Access and Supports

 

{Chart showing the relationship between Aging in Place Principles and Action Areas}