NCD letter to CMS pertaining to institutionalization
April 13, 2020
Seema Verma
Administrator, Centers for Medicare & Medicaid Services
U.S. Department of Health & Human Services
200 Independence Ave., S.W., Mail Stop 314G
Washington, DC 20201
Dear Administrator Verma:
I write on behalf of the National Council on Disability (NCD) an independent federal agency who advises the Administration, Congress and federal agencies on disability policy to ask you to- caution states usage of CMS blanket waiver’s pertaining to long-term care facilities, skilled nursing facilities (SNF’s) and/or nursing facilities (NF’s). CMS blanket waivers are a valuable tool and have been used to improve healthcare readiness and outcomes in times of disaster. But, certain provisions of these waivers can also create upheaval and unnecessary institutionalization for persons with disabilities.
NCD understands the COVID-19 pandemic is of the like that our country has never seen and understand that drastic measures need to be taken in preparation to combat the pandemic. However, freeing up hospital beds for COVID-19 patients should not be achieved at the detriment of persons with disabilities. DOJ’s 2007 Americans with Disabilities Act (ADA) Tool Kit states that “persons with disabilities should receive services in the most integrated setting appropriate to the needs of the person, and only persons who require the type and level of medical care that would ordinarily be provided by trained medical personnel in a nursing home or hospital should be placed in those more restrictive settings.”[[1]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftn1) This requirement is not waived during natural disasters or pandemics.
NCD’s report, Preserving Freedom: Ending Institutionalization of People With Disabilities During and After Disasters, discussed the influx in institutionalization of persons with disabilities during and after disasters. The report specifically discussed the institutional rate of persons with disabilities during and after Hurricane Katrina, Harvey, Irma and Maria. The limited statistics that are available, show that the utilization rate of SNF’s during disasters increased exponentially and that utilization rate did not return to pre-disaster utilization rates until months after the disaster had passed.[[2]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftn2) Leading to the conclusion that the intention of the CMS blanket waiver to be a short-term option, turned into a long-term institutional stay for many people with disabilities.
The specific blanket waivers that lead to the institutionalization of people with disabilities are waiver of the three-day hospitalization stay prior to admission to an SNF, Minimum Data Set (MDS) assessments, staffing data, and Preadmission Screening and Resident Review (PASRR). These waivers may be seen as a necessary evil during a disaster. But, such waivers should only be issued in the wake of exceptional circumstances, if ever. Persons with disabilities incur long-term repercussions when transferred to an institutional setting. Even if the intent is short-term.
With the suspension of MDS assessments and PASRR, which traditionally go hand-in-hand with the three-day hospitalization waiver, a person with a disability could be trapped in an SNF for an indeterminate amount of time. When a person with a disability is institutionalized they lose their autonomy and quite possibly their home, employment and supports within the community. When those losses are realized, it is very difficult for a person with a disability to recoup them, further hampering the person with a disability’s transition from an SNF back into the community.
What is especially concerning regarding CMS blanket waivers during the COVID-19 pandemic is that persons with disabilities are being discharged from the hospital and sent to SNF’s, which are hotspots for COVID-19. On April 8, the death toll at a rehabilitation and healthcare center in Henrico County Virginia was 35 with 90 residents testing positive for the virus. The death toll in all of Virginia was 75.[[3]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftn3) A similar outbreak has swept through a New Jersey veterans home in Paramus, which has killed 10 residents and likely contributed to the deaths of 27 others over the past two weeks.[[4]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftn4) in Maryland, 90 facilities statewide have confirmed cases of COVID-19 and as of April 6, 14 deaths have been reported at one SNF and 77 residents and 31 staff members have tested positive.[[5]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftn5) These headlines are not isolated to one region, you can find hotspots in SNF’s across the country. So, the inadvertent effect of the blanket waivers in this instance is not only placing the person with a disability in a more restrictive setting but more than likely resulting in a death sentence for many of them.
Surely, this was not CMS’s intent when initiating the blanket waiver. NCD understands the need to free up hospital beds and is empathetic to that need. However, clearing hospital beds should not be achieved by placing people with disabilities in a restrictive setting in which they risk the loss of autonomy, home, employment, community supports and in the wake of COVID-19, their life.
If you wish to discuss this with me directly I would be delighted to do that at your convenience. However, if a member of your team would like to discuss this with a member of my team please have them contact Lisa Grubb, Executive Director at lgrubb@ncd.gov, and Joan Durocher, General Counsel and Director of Policy at jdurocher@ncd.gov.
Respectfully,
Neil Romano
Chairperson
[[1]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftnref1) National Council on Disability. “Preserving Our Freedom, Ending Institutionalization of People with Disabilities During and After Disasters.” NCD.gov. </assets/uploads/docs/ncd-preserving-our-freedom-508.pdf>
(accessed April 8, 2020)
[[2]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftnref2) ibid.
[[3]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftnref3) Freeman, Vernon Jr.. “COVID-19 Death Toll at Henrico Nursing Home Rises to 35. WTVR.com. Https://www.wtvr.com/news/coronavirus/covid-19-death-toll-at-henrico-nursing-home-rises-to-33 (access April 9, 2020)
[[4]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftnref4) Stranglin, Doug. Coronavirus Deaths are Rising at Virginia, New Jersey Nursing Homes: at Least 43 Residents Have Died Since mid-March. USAToday.com. https://www.usatoday.com/story/news/nation/2020/04/08/coronavirus-death-toll-virginia-nursing-home-soar-33/2971642001/ (access April 9, 2020)
[[5]](https://ncd.gov/publications/2020/ncd-letter-cms-institutionalization#_ftnref5) WJZ. Coronavirus Latest: Cases of COVID-19 Reported at 90 Maryland Nursing Homes, Care Facilities. WJZ.com.
https://baltimore.cbslocal.com/2020/04/07/coronavirus-latest-maryland-nursing-homes/flight should be taken (access April 9, 2020)