Positive Approaches Journal, Volume 12, Issue 4

Lampenfeld, Pierce, Szymanski, Hancock | 28-39




Positive Approaches Journal - Volume 2 Title

Volume 12 ► Issue 4 ► February 2024



Aging Our Way, PA: Paths to Independence

Nathan Lampenfeld, Jessie Pierce, Gabrielle Szymanski and Kevin Hancock


On May 25, 2023, Governor Shapiro signed Executive Order (EO) 2023-09. This EO directed the Pennsylvania Department of Aging (PDA) and partners to evaluate issues facing older Pennsylvanians to support the development of a ten-year strategic plan. Recognizing that Pennsylvania has a larger than average older adult population, and that this population is growing faster than any other demographic, Governor Shapiro initiated this planning process to address the concerns of older adults across the commonwealth. To begin this planning process, stakeholders - including Pennsylvanians over the age of 60, caregivers, care partners, individuals engaged in supporting these populations - were asked to identify barriers that inhibit independence and opportunities to improve community living for older adults. Comments were organized by eight Domains of Community Living, created by the World Health Organization, and adapted for the United States by AARP. These domains are: Housing, Outdoor Spaces and Buildings, Transportation, Civic Engagement and Employment, Communication and Information, Respect and Social Inclusion, Social Participation, and Health Services and Community Supports. [i] According to many community members and service providers, Pennsylvania’s service system and infrastructure are not currently able to support these large and growing numbers of older adults. Extensive quantitative and qualitative data was shared with the Steering Committee and Subject Matter Experts, who provided recommendations within the eight Domains of Community Living. This plan, now known as Aging Our Way, PA, includes priorities, strategies, and tactics that promote the health, well-being, and quality of life of older Pennsylvanians and prepare the Commonwealth for a larger, longer-living older adult population. The plan is designed for adaptability, to respond to changing needs, shifting priorities, and available resources.

The development of Aging Our Way, PA is critical as demographic changes place a heavier burden on Pennsylvania’s service and infrastructure future. By 2030, the population of older adults, aged 60 and above, is projected to surpass 3.8 million (29% of the total population) and will outnumber every other demographic age group. [ii] Currently, nearly 14% of Pennsylvanians have a disability. [iii]  With increased age, there's a heightened risk of acquiring physical disabilities and cognitive decline, both of which have impacted our activities of daily life. Estimates suggest that 50% or more of people with Down syndrome will develop dementia due to Alzheimer’s disease as they age. [iv] Additionally, the number of people with disabilities reaching older age groups and caregivers of people with disabilities becoming older adults are increasing. Older age, compounded with a physical or cognitive disability, presents new and different challenges. Anticipating and preparing for these intersecting trends is essential, as many people will have unique desires and needs as they age and will need specialized support for their journey.

Governor Josh Shapiro recognized that these distinct and overlapping trends are a call to action to build more inclusive, supportive communities for Pennsylvania’s older adults and adults with disabilities. A Master Plan for Older Adults (MPA) is a general term for a state-led planning process that convenes multiple departments and agencies designed to foster cross-sector collaboration and improve the infrastructure and coordination of services for older adult populations. [v] This term originated through the collaboration of a collective of organizations and funders that are working to mobilize financial, social, and intellectual capital, to restructure state and local policies and convene a wide range of cross-sector stakeholders to address the needs of Pennsylvanians as we age. The latter collective includes the Center for Health Care Strategies (CHCS), The SCAN Foundation, West Health, the May & Stanley Smith Charitable Trust, and the John A. Hartford Foundation, among others. MPAs allow states to plan for the rapidly growing population of older adults and people with disabilities, as well as the various compounding demographic shifts like increasing racial and ethnic diversity, increasing rates of solo-aging, and greater longevity among the oldest of the older adult cohort. MPAs consider the entirety of state, county, local and federal policies and programs, and private industry practices that directly or indirectly affect older adults and residents with a disability. A ten-year strategic plan is optimal for stable and mature organizations like state governments, to articulate a long-term vision and to ensure that the goals of the plan are in line with that vision. Several states are actively developing and implementing MPAs. The Pennsylvania Department of Aging (PDA) began this effort immediately after the executive order was signed, using the guidelines set by the Center for Health Care Strategies (CHCS) toolkit along with recommendations from the SCAN foundation and AARP.

PDA began and will continue this effort anchored by five core tenets:

Transparency and inclusion involving significant stakeholder- and public-facing engagement as well as a strong communication plan.

Embed diversity, equity, and inclusion in all phases of development, addressing disparities and promoting equity and inclusion regardless of a person’s age, gender and gender expression, sexual orientation, race, color, religion, national origin, disability, veteran status, socioeconomic status, geographic location, genetic information, and other differences not yet identified.

Principles of person-centered planning, valuing older Pennsylvanians and Pennsylvanians with disabilities holistically, with careful consideration to each person’s unique needs and preferences.

Creation of a living document that will evolve through the ten-year span of the plan based on the changing needs and preferences of older Pennsylvanians and Pennsylvanians with disabilities.

- A reframe of how we think about, talk about and value older adults and people with disabilities to recognize the momentum, experience, longevity, economic contributions, and wisdom of older adults and people with disabilities, and how these individuals add energy, vitality, and possibility to Pennsylvania.

Guided by these tenets, PDA began an extensive community engagement series to understand the barriers that older adults and people with disabilities face in accessing community life and enjoying the journey. PDA, in partnership with the statewide network of Area Agencies on Aging (AAAs) and the Pennsylvania Association of Area Agencies on Aging (P4A), sponsored over 200 virtual and in-person listening sessions, to gather more input from an individual or group either engaged with or affected by older adult and disability related services, programs, and infrastructure. Stakeholders were also invited to submit comments by mail, an online form, or e-mail. This complementary, multi-pronged approach to stakeholder engagement provided over 10,000 constructive points to engagement that allowed the PDA staff to understand the needs and perspectives provided.

PDA also collected data through a Community Needs Assessment, developed and distributed through academic and community partners, including the University of Pittsburgh and AARP Pennsylvania. This Needs Assessment was issued to document the baseline for older adult and disability services, infrastructure, and programming, and to identify clear gaps or barriers that need to be addressed by the plan. The Needs Assessment included a randomized, representative sample of older adults and older adults with disabilities, to present a more objective understanding of perspectives and barriers related to older adult quality of life. The Needs Assessment survey was also available to stakeholders to complete at their discretion. This survey was made publicly available in digital and printed forms in multiple languages and distributed to community partners and their networks, to broaden the understanding of perceived barriers to older adults in accessing services and infrastructure.

Both the Needs Assessment and listening sessions were structured through framework developed by the World Health Organization (WHO) and adapted by AARP for the United States to support the advancement of livable communities for older adults and adults with disabilities. [vi] This framework uses eight domains of livability to assess the characteristics of a geographic area, such as a municipality, city, or state, that make it more accessible to the 60+ population (with benefits for all residents.) The availability and quality of these domains are known to positively impact the well-being of older adults and help make communities more livable for people of all ages across the world. These eight domains include:

- Respect and social inclusion: Older adults and adults with disabilities from all backgrounds are valued and appreciated and no one is excluded based on race, geography, culture, language, gender, sexuality, ability, or socioeconomic status.

- Civic participation and employment: Older adults and adults with disabilities participate in employment, training, lifelong learning, volunteering opportunities, and inform government policies.

Communication and information: Older adults and adults with disabilities access information they need in a variety of formats to stay informed and connected with their communities, families, and friends.

- Community support and health services: Older adults and adults with disabilities are assisted in staying healthy, active, and independent through community support and health services, including services responding to elder abuse, fraud, or exploitation.

- Outdoor spaces and buildings: Older adults and adults with disabilities live in an environment that includes open spaces, buildings, shaded areas, and walkways that are safe and easy to navigate.

- Transport: Older adults and adults with disabilities can get out and about using a range of affordable, user-friendly transport and associated services.

- Housing: Older adults' and adults with disabilities’ housing options are affordable, accessible, and close to transport and community services.

- Social participation: Older adults and adults with disabilities are supported to be active in their community, doing the things they enjoy.

Responses to the community engagement and the Needs Assessment survey clearly identified gaps and opportunities for improvement in each of these domain areas. Many of the comments presented by community members overlap in multiple domains, which emphasizes the purpose of this effort: to transform our infrastructure so that all Pennsylvanians are living in and experiencing the support of a holistically age- and disability-friendly community.

Stakeholders highlighted many barriers they face as areas of concern as they age:

Health Systems and Supports: Concerns focus on long-term services and supports and behavioral health services for older adults and adults with disabilities, Alzheimer's and Dementia care costs, accessibility, workforce shortages, quality of care, and enhancing older adult substance abuse treatment.

Communication Accessibility: Stakeholders emphasize the need for information to be from a source that they trust, and accessible in various formats, especially for those with vision impairments and those with hearing difficulties. They seek plain language and interpretable resources that may be understood by everyone.

- Navigation Challenges: Many community members expressed challenges in understanding where to get services and how to activate those services. Community members would like someone to assist them with navigating the system, coordinating services, and supporting them as they get connected to programs.

Social Engagement: Loneliness is a major concern for older adults and adults with disabilities. Many respondents suggest that active involvement in community life helps prevent the negative health effects associated with social isolation. This involvement can significantly contribute both to the well-being and quality of life for the individual older adult, as well as benefit the community. Social participation can include a wide range of options including community events, individual activities, such as going to the movies, or events created specifically for older adults.

Caregiver Support: Comments highlight challenges faced by professional and informal caregivers, emphasizing the need for recognition, fair pay, policy improvements, training, and resources. Financial struggles, lack of respect, and empathy in care settings are major concerns.

Ageism and Ableism: Older adults and adults with disabilities express experiencing discrimination based on age, ability, race, sexual orientation, gender, and socioeconomic status. People feel disregarded, excluded from decisions, and subject to condescension. Discrimination extends across employment, customer service, and social interactions. A significant emphasis was placed by respondents on discrimination experienced in the healthcare system. Respondents believe that more education, intergenerational social activities, inclusive community spaces, and stronger neighborhoods could enhance community cohesion and respect.

- Crime and Abuse Concerns: Older adults of all abilities fear being targets of crime, leading to isolation. Issues of abuse, neglect, scams, and exploitation demand better protection for physical, emotional, and financial well-being.

- Home Modifications: Most older adults and adults with disabilities want to age in their homes and communities, but barriers exist in accessing necessary home modifications, healthcare, nutrition programs, and social opportunities.

These themes and more, were included in qualitative summary reports for each domain and shared with the Steering Committee led by the Pennsylvania Long-term Care Council (LTCC) per EO 2023-09. This committee was supported by Subject Matter Experts (SMEs) who were recruited from state government agencies and organizations that specialize in the domain areas mentioned above. They reviewed the data and spent October and November 2023 crafting recommendation reports for each of the eight domains. These reports outlined priorities, strategies, and actionable tactics, forming the basis of the Aging Our Way, PA plan. The recommendations are intended to build upon the existing infrastructure of public and private policies and programs.

These recommendation reports informed Aging Our Way, PA’s, 5 priorities of concern:

Unlocking Access: Design and offer equitable, affordable, and available options and opportunities that older adults and adults with disabilities may choose from for healthy and engaged lives, regardless of ability; socioeconomic status; racial, ethnic, linguistic, or cultural backgrounds; or geographical location.

Aging in Community: Remediate barriers that prevent older adults and adults with disabilities from remaining in their own homes, maintaining familiar surroundings, staying connected to their communities, and living in secure dwellings.

- Gateways to Independence: Promote older adults’ safe, convenient, and autonomous use of transportation and unhindered mobility.

- Caregiver Supports: Build a comprehensive catalogue of supports and enhancements that provide caregivers with help at home, respite, training, and navigations tools.

- Education & Navigation: Lead an extensive, coordinated network of community and academic partners to raise public awareness of services for older adults, provide information that reaches everyone and is understandable by all, ensure timely and streamlined connection to assistance with any need, and resolve the challenging problems that older adults and adults with disabilities face in their daily lives.

Each priority includes several strategic approaches to address barriers presented by community members and numerous actionable and measurable tactics actions to direct resources, including policy proposals, new programs or program changes, research proposals, proposed new and changed legislation, or funding requests, to support each strategy.

 

Aging Our Way, PA will provide a unified and realistic plan to guide every older adult, family, and stakeholder through a shared vision of how we, as individuals, determine to age our way with dignity, self-determination, and the supports and services we need to remain independent. In drafting this plan, Pennsylvania is committing to a future in which Pennsylvanians of all abilities have the resources we need to age with dignity and respect and continue to be vital, active members of our communities.

In this vision for the future, Pennsylvania will serve as a model for the nation, and prove that a community is only as strong as its commitment to inclusivity, respect, equity, and support for all its residents. By embracing the AARP's eight Domains of Community Livability, we commit to creating a state where every Pennsylvanian, especially older adults and adults with disabilities, can experience happiness, dignity, and fulfillment.

Aging Our Way, PA is a living document that is designed to be refreshed and advanced as priorities shift, and tactics are executed over the next ten years and beyond. The plan that we publish in 2024 will likely be different from the plan we have in 2034. PDA will continue to engage community members, coordinate efforts with other agencies, formalize collaborative partnerships, elevate common goals, and align the execution of strategies.


 

 




References

1.     AARP Livable Communities (March 2023) The 8 Domains of Livability.

2.     Rural Pennsylvania Population Projections by Gender and Age 2020 to 2050 Center for Rural Pennsylvania.

3.     National Disability Rights Network. States Ranked by Percent of People with Disabilities Living in Hard-to-Count (HTC) Census Tracts. From Source: U.S. Census Bureau, American Community Survey 5-year Estimates 2017, and the CUNY Center for Urban Research, Hard-to-Count map data, 2019. States Ranked by Percent of People with Disabilities Living in Hard-to-Count (HTC) Census.

4.     National Institute on Aging (November 2020). NIH Publication No. 20-AG-8021. Alzheimer’s Disease in People with Down Syndrome.

5.     Center for Health Care Strategies. (2023). Getting Started with a Multisector Plan for Aging.

6.     ARP Livable Communities. The 8 Domains of Livability: An Introduction (2023). The 8 Domains of Livability.






Biographies

Nathan Lampenfeld is a William and Hannah Penn Fellow with the Commonwealth of PA. Through this program, Nathan is working within the Department of Aging, other state agencies, and countless stakeholders to develop and implement Aging Our Way, PA, Pennsylvania’s Multisector Plan for Aging. 

Jessie Pierce is the Executive Assistant at the PA Department of Aging. Prior to PDA, she provided administrative services to the State Employees’ Retirement System, the Pennsylvania Liquor Control Board, and the Governor’s Office. In her current role, she is supporting the development and implementation of Aging our Way, PA, the ten-year strategic plan for aging in the Commonwealth.

Gabrielle Szymanski is currently the Executive Director of the Pennsylvania Council on Aging at the Department of Aging. In her previous role, she served as an Executive Assistant to the Secretary for the department and worked closely with the PDA team on the creation of Aging Our Way, PA. Gabrielle graduated from Georgia Southern University with a BA in International Studies and a BA in Spanish before going on to receive her MSc in Global Health Policy from the London School of Economics.

Kevin Hancock is a Special Advisor to the Secretary for the Pennsylvania Department of Aging. He has a long history of government service, including serving as Deputy Secretary for the Department of Human Services Office of Long-term Living, where he oversaw the implementation and operationalization of Pennsylvania’s Community Health Choices Program, the 15+ billion dollar, Medicaid-funded managed long-term services and supports program. He has also held executive and managerial level roles for the Commonwealth of Pennsylvania in health and human services, primarily supporting the Medicaid and long-term services and supports program. His work has primarily focused on organizational development, project and program management, program evaluation, quality assurance, information systems, and policy development. Kevin returned to state government service after three years as a professional consultant to manage the development of Aging Our Way, PA, the Commonwealth’s ten-year strategic plan to address gaps in services and infrastructure that support older adults. In addition to his work with the Department of Aging, Kevin is also completing a Sociology PhD focused on Administration and Leadership with Indiana University of Pennsylvania. He resides in the City of Harrisburg, PA.

 

Contact Information

Additional comments and feedback can be sent to agingplan@pa.gov.