As Community Members of the MISCC, we’ve reviewed the agenda, and it is disturbing that it does not include a report about the impact of COVID-19 on people with disabilities in institutions, particularly NYS nursing facilities where more than 6,000 people with disabilities have died from COVID-19, and the steps the state is taking to ensure these people are able to receive services in a more integrated setting where they can socially distance and be better protected from the deadly virus.

Disability organizations and allies have asked the state to address the spread of COVID-19 in nursing facilities and other institutions by:

1) Ensuring for safe, expedited discharges for individuals that request it;

2) Stopping the spread within state-funded facilities and programs; and

3) Collecting and making public data specific to state-funded facilities.

In our letter, sent on April 24, 2020, we provided very specific recommendations about leveraging existing programs and FEMA funds to facilitate the transition of individuals out of these death-traps.  To date, we have not received a response to that letter or seen any changes at the state level to implement these important life-saving recommendations.  Although we were initially optimistic about doing this type of work locally in Monroe County, following discussions between Monroe County and the state, Monroe County staff became less responsive and we have had limited success in moving people out of institutions.  Nursing facilities also seem to be using the “no visitor” policy to restrict communication between residents and people working to get them out.  At this point, it seems like the entire system is working to keep people locked in institutions where they are under a constant threat of death.  From our perspective, the problem isn’t a lack of leadership by the state, but leadership that is pushing in the wrong direction. Please provide a written response to the advocate’s letter at the MISCC meeting, indicating specific responses to each of the recommendations.

This council was formed to ensure that people with disabilities are able to reside in the most integrated setting, avoiding institutionalization and be served in the most integrated setting possible.  This was clearly articulated in the legislative intent section of the law that established this council. 

“…the legislature hereby finds that New York state has no centralized mechanism in place to determine whether or not people of all ages with disabilities are residing in the most integrated setting possible. In order to ensure that the state of New York is in compliance with the requirements of the Olmstead decision, the legislature hereby finds that it is incumbent upon New York state to develop and implement a plan to reasonably accommodate the desire of people of all ages with disabilities to avoid institutionalization and be appropriately placed in the most integrated setting possible…” 

Unfortunately, the agenda – as constructed – does not appear to support council members performing our established function under the law.  We don’t have an agenda item focused on getting people out of institutions – even as a deadly virus sweeps through them “like fire through dry grass”.  Please ensure that the agenda for this meeting – and every meeting – includes a section specifically related to efforts to support the community integration of institutionalized people with disabilities.

To be fair, we’ve never been allowed to perform the functions listed in the law.   Although the council never was allowed to fulfill its responsibilities as defined in the law, in 2012, Governor Cuomo established his own “Olmstead Implementation Development Cabinet”.  In 2013, the cabinet published its own “Report and Recommendations of the Olmstead Cabinet: A Comprehensive Plan for Serving New Yorkers with Disabilities in the Most Integrated Setting.”  In that report, the New York State Department of Health set a goal of reducing the long-stay population by 10 percent over five years.  According to the report, “As of December 21, 2012, the total number of nursing home residents was 119,987, of which 92,539 have stayed 90 days or more.  We never received a written report documenting the progress the state has made on this goal. Based on these numbers, the number of nursing facility residents who have been in the facilities 90 days or more, should have been reduced to 83,285 by December 2018.  Although we were never asked, it would make sense that the state would extend this goal beyond the five years, thus reducing the long-stay residents by another 2% in 2019.  This would mean we would expect the state to have reduced the number of long-stay nursing facility residents to 81,619 in December 2019. Please provide the council with a report on the long-stay nursing facility population as of December 2019, so we can effectively assess whether the state has made sufficient progress on this self-identified goal by Governor Cuomo’s Olmstead Cabinet.  

Additionally, Governor Cuomo’s Olmstead Cabinet’s report acknowledged that having nursing facility payments “carved out” of managed care rates (paid directly by state Medicaid instead of the managed care company) created an incentive to institutionalize high-cost people.  That is because a managed care company could simply reduce hours or otherwise pressure an individual who they feel is “too expensive” in the community into nursing facility placement where the MCO would not be responsible for any of the costs associated with that person.  The Olmstead Cabinet’s plan proudly acknowledged that the 2012-13 state budget removed this financial incentive to nursing facility placement.  However, the state has reversed this policy and is reinstituting a “carve out” that is recognized – in the Olmstead Cabinet’s own report – as promoting institutionalization.

We have proposed mechanisms that would compensate for this problem and leverage managed care to promote community integration, such as utilizing a high-needs community rate cell.  The state has rejected these proposals, and despite assurances by the Department, the community remains very concerned about the nursing home carve-out’s potential to encourage, either directly or indirectly, institutionalization. These concerns are exacerbated by recent policy changes that will soon take effect requiring routine assessments for “safety,” a vague term subject to interpretation, when individuals receive 12 hours or more of assistance, a seemingly arbitrary point that to many, seems more based on cost than safety. Please provide an update on these policy changes and the steps the state is taking to track data at a state and plan level to ensure these policies are not having the effects that many advocates are concerned about. 

The COVID-19 pandemic has highlighted disparities within our systems for providing healthcare and LTSS, with the majority of COVID-19 deaths being Black and brown individuals both in the community and in our institutions.  Although the pandemic has highlighted how structural racism and ableism are tied together, we don’t see the administration valuing the services that the Disability Community developed that are most relevant to addressing these disparities, specifically Consumer Directed Personal Assistance.  This model does not just give people with disabilities control over their lives, it provides a mechanism for immigrants, non-English speakers, people of color, and LGBTQ individuals to secure personal assistance services that are responsive to their needs.  The CDPA model is currently the only practical method for people with disabilities in the community to receive assistance with health-related tasks, given that the state has failed to implement the advanced home health aide.  The model is also responsive to COVID-19.  It is obviously better than institutionalization which for over 6,000 New Yorkers was the same as a death sentence, but it is far better than traditional assistance in the community.  Instead of having multiple strangers sent to the homes of people who are at high risk from a COVID-19 infection and those workers working in multiple homes, the disabled individual or a family member can control and limit who is in their “COVID-19 bubble”.  We are aware that the Department of Health, SUNY Albany and Northwell Health have been directed to study racial disparities at play in COVID-19 outcomes.  Please provide a report on whether the researchers looked beyond standard “healthcare” disparities and considered the disparities in the provision of LTSS – including the fact that people of color with significant disabilities are more likely to be institutionalized than their white peers and whether researchers considered how those disparities – unique to people of color with significant disabilities – could be addressed.

Although we have a historic level of unemployment, the crisis in securing workers has only gotten worse.  This is driven, in part, by unemployment policies that make being out of work more lucrative than working, but it is also by underlying racism and ableism that drives down the wages of attendants and home care workers.  Frankly, the wages are low because society neither values the Disabled individuals who need assistance or the people who provide it – the vast majority of whom are immigrants and women of color. The devaluation of all of these people comes together in a system that the state has determined in some places that their work is not worth as high a wage as a fast-food employee.

At one time, we were able to maximize the home care rates and pay an almost-reasonable, but still very low, wage to workers.  It was a few dollars above minimum wage.  With some exceptions, state policies and budget initiatives have driven wages for home care down so that we barely have enough to pay minimum wage.  It is notable that other service systems – like the developmental disability system – have received regular increases in rates to provide better wages for their staff. Please authorize the establishment of a MISCC task force that includes community members to evaluate the issue of inadequate home care rates and identify how we can dismantle the structural racism and ableism embedded in this system.

“COVID-19 tore through New York state’s nursing facilities, killing more than 6,000 people — about 6% of its more than 100,000 nursing home residents.”

This has some significant implications for future data.  It is very likely that a significant number of long-stay nursing facility residents died as a result of the pandemic.  Consequently, a simple census of long-stay nursing facility residents – post-COVID-19 – will be reduced by those deaths.  This would significantly misrepresent what is actually happening.  Consequently, we will need to develop reporting mechanisms to assess the impact of our community integration efforts which would compensate for these COVID-19 deaths. 

It is also likely that nursing facility residents – like other people – may have avoided seeking medical care due to concerns about contracting COVID-19.  To get a better sense of the impact that COVID-19 has had, the council would need data on the comparative death rate of nursing facility residents during the period of the pandemic compared to the prior year to fully understand the number of institutional deaths. 

It is important that the state take action on these issues.  Although criticism of the state and Governor has generally been limited to concerns about a callous disregard for the lives of nursing facility residents, the financial implications of the COVID-19 pandemic deaths may raise other questions. 

New York State spends about $8 billion of Medicaid funds on nursing facilities each year.  Based on the report that 6% of the nursing facility population has died, the deaths of these residents may have reduced the state’s Medicaid spending for this population by nearly a half-billion dollars.

Throughout the pandemic, individuals have spoken about “culling” the old, weak, and infirm. In this context, the state should be doing everything it can to advance the integration of institutionalized people with disabilities to mitigate the further impact of this pandemic to avoid looking as if it was leveraging the pandemic for other purposes.

Although we have spoken a great deal about nursing facilities which represent the largest and most significantly-impacted institutionalized population, these concerns apply to all institutional and congregate settings. Please work with community members of the council to identify data that we can utilize to better understand the impact that COVID-19 has had on residents of nursing facilities and other institutional/congregate settings in New York State.

Finally, we appreciate the appointment of a Chief Disability Officer.  It is an important first step in establishing an effective relationship with the Disability Community. It is critically important that the state work with the Disability Community on these, and other, issues.  People with disabilities in New York State are not only institutionalized – and dying in those institutions, we are allowed to be paid less than the minimum wage paid to non-disabled people, we can be forced to undergo “treatments” against their expressed wishes, and we are at risk of being given death with supposed “dignity” while our state denies us the freedom we have a right to as New Yorkers.

Although we think that the best way to limit unnecessary COVID-19 deaths is through community integration, it would also make sense to talk about institutional reform such as:

1. improving the oversight of these facilities and our response to abuse and neglect – including more effective sanctions against these institutions,

2. ensuring that funds go to workers and resident needs by extending Executive Order 38 to these for-profit entities and taking steps to shift the focus back to meeting the needs of residents instead of ensuring profit for private equity interests, and

3. educating medical professionals – particularly the ones who practice in these facilities – about the lives of people with disabilities to address the ableism that impacts their decisions about community-based services and end-of-life decisions.

We expect that the Chief Disability Officer will meet regularly with the MISCC community members and the organizations that represent people with disabilities in our state capitol on the important issues impacting our community. 

 

Sincerely,

Bruce Darling and Denise Figueroa, Community Members of the Most Integrated Setting Coordinating Council