Aging with I/DD as a Paradigm for the Aging Population at Large

Americans are getting older—by 2030 one in five will be 65 or older according to the U.S. Census Bureau. These demographics are driven by young adults having fewer children and baby boomers living longer. Individuals with intellectual and developmental disabilities (I/DD) are also living longer, with those 65 and older expected to reach 1.2 million in 2030, nearly double the 2000 figure. As the elderly population grows, the cost of healthcare and other entitlement programs will strain the economy.

As policy makers grapple with how to address this aging phenomenon, they should look to solutions that have proven effective for people with I/DD. These include: 1) Focusing on social determinants of health and supporting meaningful social roles; and 2) Promoting Whole Person-centered planning and support.

Focusing on Social Determinants of Health and Supporting Meaningful Social Roles

Research shows that social conditions such as economic stress, inadequate housing, and persistent isolation can negatively impact a person’s physical and mental health. In response, health care systems are pursuing partnerships with community-based organizations to address these social determinants of health. Although this integrated approach is new to healthcare, it is the norm for high quality I/DD support and service organizations.

Partnering with community-based organizations to promote opportunities for community inclusion and integration is the foundation of high quality I/DD services. The richness of community-based options available for individuals with I/DD is an important measure of quality care. By supporting people in employment, volunteerism and other socially meaningful community engagement (e.g., friend, congregation member, constituent), I/DD service providers have led the way in helping people gain independence and address systemic devaluation that reduces opportunities and recognition and, ultimately, leads to discrimination.

Meaningful employment and community engagement contribute to both economic and social growth. Recognizing this, I/DD providers have been creating opportunities for employment and supporting individuals at job sites with job coaching and training programs for three decades. AHRC NYC operates one of the largest supported employment and community services programs in the nation, tailoring job supports and volunteer opportunities to nearly 3,000 people. In light of the economic shift underway, translating this to the general aging population by engaging more seniors in paid jobs or volunteer activities, would significantly benefit the economy. In 2015 almost 25% of adults 55 and older in the U.S. volunteered, resulting in an economic benefit of $77 billion dollars (Corporation for National and Community Service).

Promoting Whole Person-Centered Care Planning and Support

Person-centered planning, long used in the I/DD community, considers the lifegoals and plans of the individual, placing the person at the center of the care delivery system. It is a self-directed but supported process that helps providers discover how a person wants to live and what supports need to be in place to help them achieve a meaningful and productive life. The I/DD community is also incorporating the use of various assistive technology solutions to further promote more independent living. This highly customized support and service planning process leads to lower reliance on institutional settings to meet individual needs.

Person-centered planning is gaining momentum in eldercare, where it has the same potential to provide a platform for tailored supports across the continuum of care. This planning process can help maintain a high quality of life, while reducing reliance on nursing homes. It may also improve end-of-life care by encouraging conversations about personal goals and preferences during the last stages of life, when the focus of the traditional healthcare system is often on intensive, physician-prescribed medical interventions.

Methods proven successful in addressing social determinants of health and helping individuals with I/DD live socially connected and meaningful lives can be used to provide proactive, creative approaches to prevent or forestall more serious declines in health and functioning among the general aging population. This would help curtail rising health care costs and improve the quality of life for older adults who will soon represent 20% of the US population.

Below is an example of how whole person planning and a focus on social determinants of health can help build a long, fulfilling independent life – please meet Rose.

In her early 30s Rose moved from a certified group home setting to an apartment with her mother on the Lower East Side of Manhattan. There, she thrived with supports and programs from AHRC NYC. Rose attended a day services program where she became socially connected with friends and participated in a workshop where she was also employed.

At the same time, Rose became increasingly integrated in her community and continued to learn skills needed to live as independently as possible (money management, cooking, shopping, housekeeping, etc.). Rose was so successful in reaching her self-determined life goals that, even after her mother passed away (over 40 years ago), Rose was able to remain living in her home well into her 90s.

As Rose aged and her needs and interests changed, AHRC worked with Rose to modify her plan of support, including a shift to more in-home services. Where she was once able to travel alone by bus, Rose eventually came to need help getting to medical appointments and the various activities she most enjoyed in the community. AHRC ensured that her changing transportation needs were addressed and made arrangements for services from the Visiting Nurses program to help Rose with her medications. Rose’s self-directed planning process evolved over time to help support her ultimate goal for living an independent, meaningful and productive life.

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