Articles and Evidence

1. OBRA ‘87

The federal Nursing Home Reform Act (aka. OBRA ‘87) established minimum standards of care and rights for people in certified nursing facilities, specifically facilities funded by Medicare and Medicaid. Out of OBRA ‘87 came the Nursing Home Resident Rights.

2. Nursing Home Resident Rights

The Nursing Home Resident Rights are a set of rights guaranteed to nursing home residents by OBRA ‘87. A printed copy of these rights are given to individuals upon entering into residency in a facility. Included in these rights, and paramount to the issue of a pandemic lockdown, is the clearly stated…

“Right of Access to
• Individuals, services, community members, and activities inside and outside the facility
• Visitors of his or her choosing, at any time, and the right to refuse visitors
• Personal and medical records • His or her personal physician and representatives from the state survey agency and long-term care ombudsman program
• Assistance if sensory impairments exist
• Participate in social, religious, and community activities”

3. 1135 Waiver

In certain circumstances, the Secretary of the Department of Health and Human Services (HHS) using section 1135 of the Social Security Act (SSA) can temporarily modify or waive certain Medicare, Medicaid, CHIP, or HIPAA requirements, called 1135 waivers. Under the national public emergency declared due to coronavirus, the 1135 waiver went into effect giving states the ability to restrict all visitation to all facilities, CMS funded or private pay. This was carried out via executive order by state governors and through mandates issued by state departments of health. While CMS is the federal agency (under HHS) to issue the guidances for nursing homes, states are the enforcers of the guidance.

Conclusion

The rights of long term care residents are under the control of multiple parties, public and private, with different and often times conflicting agendas. When blanket rules are applied during national public emergencies, considerations for resident rights and the complexity of needs is not taken. And policy is written without a representative of their voice. To account for the mental, emotional and physical wellbeing of the resident at all times and to guarantee the sanctity of their rights during any public emergency, yet maintaining the safety of public health, we demand the federal and state designation of an essential caregiver available to every resident.

4. The Issues

1. CMS provides visitation guidance to facilities which they fund, ie. nursing homes and hospitals. This does not include Assisted Living Facilities, Memory Care Facilities, Independent Living Facilities and all private pay residential healthcare facilities. The licensing agency is who dictates the guidance for these facilities, which often is the state and/or the county (ie. public health, etc.) They are following guidance from the Centers for Disease Control (CDC). (Which is who CMS is also basing their guidance upon.) The issue: no clear source of policy direction and no oversight or enforcement of said direction.

2. While CMS offers the visitation guidance this does not guarantee that states or facilities follow that guidance. (This is inherent in the word ‘guidance’. For reasons still unclear, CMS will not mandate.) For example, in the state of NY, the enforcers of CMS guidance is the NYS Dept. of Health. Since DoH has issued stricter guidance than CMS, they choose to follow their own rules and not CMS (see: CMS Guidance 9/17 and NYS DoH Memo 9/17).

Essential Caregiver
Position Papers

In order to define ‘what is an essential caregiver’ and the functionality of this designation, the Essential Caregivers Coalition and Caregivers for Compromise have put forth these papers to aid in policy creation.