DignityMA Responds to State and Fed Plans for Aging

Two Federal and One State Agency offered opportunities for the public – both individuals and organizations, such as Dignity Alliance, to make suggestions for update strategic plans to serve a guidance from 2025 – 2030.  They asked, Dignity Alliance answered!  Here is a summary of what was requested and our answers based on input from a committee of Dignity Alliance participants.

Request for Information (RFI) on the National Institute on Aging (NIA) Strategic Directions for Research

National Institute of Health / National Institute on Aging is the federal agency that directs and funds research on issues of concern to older adults and government agencies and academic institutions.
Office of Extramural Research

DignityMA Response to the RFI on NIA Strategic Directions for Research

• Full Recommendations for Strategic Directions for Research by DignityMA
• Addendum to Strategic Directions for Research by DignityMA

What emerging research needs and future opportunities that reflect the next five years should be included in the Strategic Directions for Research, 2026-2030 document?

1. When a hospital patient is transferred to post-acute care, there needs to be sufficient communication between the acute care caregivers, and the next set of caregivers, including the patient and family.
   Preliminary evidence suggests that inadequate communication can lead to adverse events that may require re-hospitalization, or worse.  One patient reported that when she was transferred for hospital to a nursing home (one that has a 5 – star CMS rating), the rescue inhaler on which she depends, was not included in the transferred materials from the hospital to the nursing home, and was not obtained by the post-acute care team in over 6 hours wait, resulting in the patient returning to the hospital to receive proper care.  Research is needed to better improve transitions of care, and to ensure that the patient’s preferences are honored.
2. Research is needed to prove the business case for small long-term care facilities that can offer private rooms and baths for improved resident privacy and infection prevention.
   The VA small homes model and the Greenhouse model of care in which facilities have low numbers (12 – 14) of residents and private rooms and baths has been demonstrated to provide better quality care, however, Medicaid rates appear to be insufficient or costs are too high for making such improvements in care for those dependent on Medicaid to pay for long-term services.  More research is needed to determine the true cost of providing such small facilities separating out capital costs from operating, and what is the cost of caring for fewer residents in a facility.  This will require analysis and implementation of the new job roles, definitions and responsibilities in the Greenhouse model of care.
3. Research in needed on the effects of extreme heat in areas of the country that have been more accustomed to dealing with extreme cold.
   It is necessary to determine what options are available for government, property owners, and others to allow cooling to be affordable, especially in already constructed facilities, to be affordable to private and public payers, and can that cooling off-set health care costs of people adversely affected by extreme heat such as older adults and people with disabilities who have chronic health issues or are taking medication that adversely impacts them in extreme heat situation.
4. Research is needed into the barriers to medication reconciliation at all points of care.
   There has been considerable research, and much has also been written about the impact of poor medication reconciliation, including many recommendations regarding best practices.  We suggest research is needed to illuminate the ongoing barriers to medication reconciliation.  Perhaps it has as much to do with medical staffing issues in health care facilities.  However, in the community, corporate greed on the part of pharmacies appears to be playing a big role.  Pharmacies have automatic refill programs, which they claim assist the client.  However, we have observed that pharmacies are increasing their profit margins with a disregard for client safety.  Comprehensive research into the barriers to medication reconciliation at all point of care is needed.  The findings could be both life-saving and cost-saving.
5. Research is needed to develop a consensus on crisis standards of care, and their impact on older adults and people with disabilities.
   There appears to be an attitude that, when a shortage of available professionals or necessary medicine and medical technologies, that older adults and people with disabilities are not as valuable as younger, more able patients.  The calculation is apparently based on how many productive years can be gained by saving the life of an older person placing a value on economic activity.  Are there deaths that are preventable, or where people “die before their time, before their live expectancy, when extraordinary measures are withheld because a determination is made that the effort won’t gain that much more time?  Is the fact that most nursing home residents, the majority of whom are women, are not given adequate staff and resources because the residents will eventually die?  How many people die prematurely because there is no incentive to help them live longer?
6. Research is needed into the significant number of older adults in nursing homes who are administered with antipsychotic drugs.
   Why is the number of nursing home resident diagnosed with schizophrenia, and prescribed anti-psychotic medication (or not diagnosed and give the medication anyway so much higher that the diagnoses among the general population in the same age cohort?  Are antipsychotics used primarily to keep nursing home residents restrained and otherwise demanding services, especially when there are insufficient staff to meet their care needs> Would it be useful to devise a drug registry for the prescription and use of anti-psychotics similar to such registries developed to track the over-prescription of opioids?
7. Research is needed to support minimum standards for nursing home staffing.
   When the federal government research the need for minimum staffing regulations for nursing homes in the United States, the final rule set the staffing ration lower than most research has recommended and lower than several state standards.  Research is needed to confirm the correct level and the outcomes needed to prove the efficacy of the level.  Additionally, research should also be conducted to determine whether a higher standard for staffing is needed for dementia special care units and the credential or training that should be required of staff for those units.
8. Research is needed to document the importance of requiring access to licensed social workers for all nursing homes to provide access to licensed social workers for the benefit of residents, staff, and families.
   Under current CMS regulations, social workers are only required for nursing homes with 120 licensed beds.  There needs to be research on providing access to social workers in smaller nursing homes, even as a shared employee with another nearby facility or on a part-time basis.

Strategic Framework for a National Plan on Aging

AGING IN THE UNITED STATES: A STRATEGIC FRAMEWORK
FOR A NATIONAL PLAN ON AGING
The Interagency Coordinating Committee on Healthy Aging and Age-friendly communities
Chaired by the Administration for Community Living (ACL) which is the federal agency that provides resources to serve older adults and people with disabilities, including Ombudsmen and other programs authorized by the Older Americans Act.
Report to Congress, May 2024

DignityMA Response to the Strategic Framework for National Plan on Aging

• Full Recommendations to Strategic Framework for National Plan on Aging by DignityMA
• Addendum to Strategic Framework for National Plan on Aging by DignityMA

1. What is missing from the Strategic Framework for a National Plan on Aging?
   There should be a specific implementation plan with a schedule for implementation of the various sections, and a lead agency identified as having the responsibility for coordinating those agencies that will be included in the implementation.  Without an implementation plan with specific assignments of responsibilities and a schedule for implementation, the plan will only be nice words and goals, resulting in unfulfilled promises and unmet needs.  Hope cannot be a strategy!
   In order for effective operation of the Inter-Agency Council, there should be a requirement in the plan that appointees to the Council should be the agency head or an official who reports directly to the head of the agency.
   Missing from the strategy is any indication that consumers and advocates have had input.  The individual and organization surveys need to record whether the respondent is a consumer of services for older adults or advocates.
2. What could be added or changed to the Age-Friendly Communities domain in the Strategic Framework for a National Plan on Aging?
   • Services and programs at the state and local level are often delivered in an uncoordinated fashion by agencies, for-profit and non-profit non-governmental organizations.  The federal interagency council should be replicated to provide coordination of programs and services at state and local levels.  In addition to agency and organizational representative on local and state coordinating councils, consumers with “lived experience” need to be incorporated.
   • Diversity, Equity, and Inclusion efforts must also promote accessibility for older adults and people with disabilities
   • Age-Friendly communities need to provide assistance to older adults and people with disabilities for dealing with extreme heat conditions, including in northern United States which is beginning to experience periods of extreme heat not historically common in those regions.
   • All facilities designated as homeless shelters should be compliant with the Americans with disabilities act.Financial assistance from federal and state governments is often needed to help age-friendly communities with infrastructure improvements such as accessible sidewalks.
   • Independent living facilities that provide rooms for older adults and people with disabilities should be encouraged to include common nutrition and health services similar to the “boarding houses” of earlier generations.
   • Older adults and people with disabilities need free or reduced fare public transportation which has worked successfully in a growing number of cities.  Amtrak trains need to be more accessible for people with mobility issues.  Currently, only ACELA trains have easier accessibility, yet this service is more expensive.  Rail platforms need to be at a level for wheelchair and walker access.
   • The Massachusetts Senior Citizen Circuit Breaker law could serve as a national model providing a refundable tax credit when costs for services exceeds 25% of income. 
   • The small home model (used by the Greenhouse and VA programs) should be expanded to serve more people in the community.  This is likely to require some improvement in reimbursement rates to account for the more person-centered approach.  Large scale nursing facilities should be phased-out in favor of support for the small home model.
3. What could be added or changed to the Coordinated Housing and Supportive Services domain in the Strategic Framework for a National Plan on Aging?
   • Rental assistance voucher funding needs to be increased and landlords need to be challenged legally if they refuse to honor such vouchers.
   • Aging Access Points should recognize and serve the needs of older adults and people with disabilities who are incarcerated and those who can be paroled to better address health and social needs.
4. What could be added or changed to the Increased Access to Long-Term Services and Supports domain in the Strategic Framework for a National Plan on Aging?
   • Programs and funding to support age-friendly communities should encourage the operation of child care facilities in nursing homes, assisted living facilities, and independent living centers that serve older adults and people with disabilities.  Priority should be given to the children of direct care workers employed by those facilities.
   • Private equity firms and real estate investment trust should not be permitted to own or operate long-term services or supports.
   • Programs and funding to support age-friendly communities should encourage construction of new or repurposed facilities for housing for direct care workers near their workplace.
   • A federal income tax credit should be authorized for caregivers, including spouses, caring for a family member at home.
   • Federal regulations and funding should encourage improved training for state surveyors including recognizing person-centered care.
   • The federal minimum personal needs allowance for nursing home residents – currently $30 per month, needs to be increased to $85 per month taking purchasing power into consideration.  The federal government needs to increase the PNA and provide annual inflation-based increases.
   • When the Roosevelt Administration created Social Security, few, if any, skilled nursing homes or assisted living facilities existed.  Families cared for older or disabled adults in the home.  Many people, with limited means, are able to put money aside for long-term care, services and support until it’s too late to accumulate a sufficient amount.  A new financing system, perhaps focused on the rapidly growing 85+ year olds is needed.
5. What could be added or changed to the Aligned Health Care and Supportive Services domain in the Strategic Framework for a National Plan on Aging?
   • Programs should be available on a digital platform
   • Private equity firms and real estate investment trust should not be permitted to own or operate aligned health care and supportive services.
   • CMS should be encouraged to require that all nursing homes provide access to licensed social workers for the benefit of residents, staff, and families.
6. CMS should be encouraged to require that all nursing homes provide access to licensed social workers for the benefit of residents, staff, and families.

ReiMAgine Aging: Age- and Dementia-Friendly Massachusetts Action Plan Refresh

Massachusetts Executive Office of Elder Affairs is the state agency that provides programs and services for older adults in Massachusetts.

DignityMA Response to State’s ReiMAgine Aging

Please provide your feedback on how to make Massachusetts more age- and dementia-friendly and how to strengthen the state’s five-year-old multiyear Age-Friendly Massachusetts Action Plan.  Review the current plan Oct. 1, 2021 – Sept. 30, 2025 .

• Full Recommendations to ReiMagine Aging by DignityMA
• Addendum to ReiMagine Aging by DignityMA

1. What do you like about growing older in your community?Community living allows older adults, people with disabilities and families to remain independent with dignity and receive person-centered care and services.
   Why?  This is the fulfillment of a basic human right and is the foundation of a caring Commonwealth.
2. How have you been able to contribute to your communities’ efforts to support aging well? 
   • Dignity Alliance, when first organized four years ago, successfully fought a proposed state initiative to relocate nursing home residents to open beds for COVID patients.D
   • Dignity Alliance supports the Marsters v Healey settlement to help nursing home residents return to their community with supports and services to enable them to age in community settings for the rest of their lives.
   • Dignity Alliance advocated for the passage of a $200 million bond authorization (C. 15 Acts of 2021) to construct veterans, small homes across the Commonwealth, and advocates today for the state to fully implement that program.
   • Dignity Alliance contributed significantly and advocated extensively to the passage of Chapter 197 of the Acts of 2024, the comprehensive long-term care reform legislation.
   • Dignity Alliance contributed suggestions and advocated for passage of Chapter 150, the Affordable Housing bill, including supportive services with housing, authority to develop accessory dwelling units, improve access for people with disabilities, increase housing vouchers.
   • Dignity Alliance contributed to the development of a more age-friendly and ability
3. Looking forward to the next 5 – 10 years, what are the top three ways we can best support people to age well?
   • Restore the position of Secretary of Elder Affairs (or Aging and Independence) to full partnership and participation in the Governor’s Cabinet.  There’s a compelling argument for elevating the Secretary of Elder Affairs to a full cabinet member position:
     • Representation for a Growing Demographic: Massachusetts has a rapidly growing older adult population, projected to reach one in four residents by 2030. Upgrading the Secretary’s position ensures their voice is heard at the highest levels of government;
     • Cross-Departmental Issues: Issues impacting older adults span various departments (transportation, housing, health, etc.). A full cabinet member can advocate for these needs across agencies, fostering a more coordinated approach.
     • Equal Footing with Other Secretaries: Budgetary decisions and resource allocation are crucial. A seat at the Governor’s cabinet table ensures the Secretary can effectively compete for resources alongside other agencies.
     • Direct Access to the Governor: Direct reporting to the Governor allows the Secretary to bypass bureaucratic hurdles and present elder affairs directly to the state’s leader, leading to swifter action.
     • Historical Precedent: Highlighting the success of the Secretary as a full cabinet member under previous administrations strengthens the argument for returning to that structure.
     • Conclusion: Elevating the Secretary of Elder Affairs to a full cabinet member position ensures a strong voice for a significant and growing demographic in Massachusetts. This will allow for better coordinated services, improved resource allocation, and ultimately, a higher quality of life for older adults in the state.
       The Massachusetts State Plan on Aging for 2022 through 2025is intended to reflect the voices of communities, including older adults, their families and caregivers, as well as community-based organizations and partners in the aging services network.
       However, with the possible exception of the Ombudsman Program, there is very little in the current State Plan on Aging that includes residents of skilled nursing facilities and rest homes.  The approximately 32,000 residents of nursing homes need to be included in the Executive Office of Elder Affairs state plan on aging.  The voices of nursing home residents, members of Family Councils and relatives of nursing home residents need to be fully heard.
   • Transformational reform is needed in long-term care. NOTE: Enactment of Chapter 197 of the Acts of 2024 is an important step in reform, but more needs to be done, especially in enforcement of laws and regulations designed to protect nursing home residents and improve the quality of care.
     • The minimum staffing level of 3.58 hours per resident day should be fully enforced and evidence-based studies conducted to determine the appropriate level given the increasing acuity issues.  There should a minimum staffing level for dementia care units that may need to be higher than to ratio for non-dementia resident units.
     • All skilled nursing facilities must provide no greater than two-residents per room, and a goal should be established for a move to single rooms and individual baths except where residents voluntarily request a roommate, such as a spouse.
     • Increase the Personal Needs Allowance (PNA) and provide a mechanism for annual increases based on cost of living.
     • Equalize nursing home resident rights with the rights of all other clients of state supports and services.
     • Create an office of Institutional Care Ombudsman parallel to the office of Community Care Ombudsman to better resolve complaints by nursing home residents and their families.
     • Hire enough nursing home and assisted living surveyors to closely monitor resident treatment and needs to more reasonably monitor nursing home compliance.
     • Develop improved regulations relative to ownership, transfer of ownership and operations with added requirements for Private Equity Firms and Real Estate Investment Trust.
     • Create in statute a provision to claw back previous ten years of lost tax revenues from non-profit nursing homes when sold to for-profit ownership comparable to the treatment of sale of tax-exempt lands.
     • Develop a plan to preserve the Special Needs Trust for Disabled Seniors
     • Establish Guardians as Providers of Medical Care to support the rights of incapacitated persons.
     • Protect the homes of seniors and disabled people on Mass Health.
     • Develop a plan to protect wheelchair users from delays in repair.
     • Massachusetts needs to enforce the regulatory requirement mandating employment of a social worker in nursing homes, and make it applicable to all nursing homes regardless of size.  Nursing homes smaller than 120 beds (CMS requires social workers in nursing home with 120 or more beds) even if shared with another facility or on a half-time basis.
   • Address the provisions of the Marsters v. Healey Settlement to provide informed choice, case management services, specialized services, and residential services and supports necessary to transition no fewer than 2,400 class members from nursing facilities to the community.
     • Provide all people with disabilities in nursing facilities with in-reach, information, opportunities, and support to assist them in making an informed choice about whether to transition from a facility to the community, which will be provided through the Commonwealth’s Community Transition Liaison Program operated by the Executive Office of Elder Affairs; the Money Follows the Person program operated by the Executive Office of Health and Human Services’ Office of MassHealth; and an expanded case management program operated by the Department of Mental Health;
     • Provide transition planning and assistance to all people with disabilities in nursing facilities who are interested in living in the community through these same programs;
     • Provide specialized and other behavioral health services, and service coordination, to people with serious mental illness;
     • Provide residential services, and/or non-residential services with housing supports, and/or home modifications so that no fewer than 2,400 class members in nursing facilities can transition to the community over an eight-year period;
     • Provide services in nursing facilities to assist people with disabilities to transition to the community;
     • Collect and share data concerning the provisions and implementation of the Agreement; and
     • Condition obligations under the Agreement to appropriations by the Legislature
4. What are the factors or barriers to aging well that would make you move to another community?
   • Failure to work to ease Ageism and Ableism.
   • Competition for resources to support other state priorities at the expense of older adults and people with disabilities.
   • Lack of Political will.
5. What are the top 5 aging-related topic areas that you think should be addressed in the statewide Age-and Dementia-Friendly action plan? (Please select your top 5 topics.)
   • Climate Resilience (e.g., Build community capacity for older adults’ climate resilience, preparation and advocacy for hazard mitigation, extreme heat safety, and climate adaptation actions.)
   • Economic Security (e.g., Explore family caregiver tax credit; increase opportunities for workers without access to retirement saving plans at work to create their own savings accounts; increase access to healthy and nutritious food; and increase employment opportunities for older adults.)
   • Home and Community Based Care (e.g., Increase programs that assist people to stay in their homes, in-home services, villages, intergenerational living, etc.)
   • Housing (e.g., Increase affordable housing options for older adults, including service enriched housing, assisted living, etc.)
6. Caregivers (e.g., Support paid and unpaid caregivers, including those living with dementia and their caregivers; respite care and social/supportive day programs.)
7. Are there any other aging-related topic areas that you would like to add?
   • Dementia Education and Support
   • Transportation and Mobility
8. Any other information or ideas you would like to share: 
   Dignity Alliance recommends that a final draft be subjected to statewide listing sessions in-person and virtual before being adopted.  This would help the media and public better understand the need for the plan and updates in order to ensure that there is broad support among those most directly impacted.
   There should be an implementation plan for the State Plan indicating in each case, the office responsible for implementing the plan, and annual reports to the public and advocacy groups on progress.
9. Massachusetts needs to enforce the regulatory requirement mandating employment of a social worker in nursing homes, and make it applicable to all nursing homes regardless of size.  Nursing homes smaller than 120 beds (CMS requires social workers in nursing home with 120 or more beds) even if shared with another facility or on a half-time basis.

Endorsements regarding  DignityMA’s input to federal and state plans on aging

September 2024

• Meg Coffin,  Center for Living & Working, Inc
• COP Amputee Association-COPAA
• Jerry Halberstadt  Stop Bullying Coalition
• Wynn Gerhard
• Paul J. Lanzikos
• James A. Lomastro PhD
• Margaret Morganroth Gullette, Ph.D.   WSRC. Brandeis University
• Former Senate President Pro Tem Richard T. Moore
• Matt Pellegrino, Northeast Independent Living Program
• Dr. Patricia P. Shopland, Elder Citizen
• Norma.Swenson