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DDS state-operated group homes facing a staffing and possible closure crisis

October 22, 2021 9 comments

State-operated group homes for persons in Massachusetts with developmental disabilities appear to be facing a perfect storm of staffing shortages, potentially unvaccinated staff, and a possible departmental effort to shut at least some of the residences down.

The staffing shortages are also affecting the much larger network in the state of corporate provider-operated group homes funded by the Department of Developmental Services (DDS). But we are increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.

We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.

Resident moved without notice

This week, we received a report that a state-run group home in western Massachusetts was being closed and that at least one of the residents was moved without written notice as of Thursday (October 21) to a location in another town.

Earlier this month and this week, we received reports from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated for COVID-19.

We have not been able to confirm those reports about closures of homes in southeastern Massachusetts. A DDS official privately told a COFAR member that no state-operated group homes had yet been closed in the region as of mid-October, but that some closures could happen after October 17. The official referred to the possibility of “temporary consolidations” of group homes around the state.

In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated. While the executive order apparently applies to staff in state-operated group homes and the Wrentham and Hogan Developmental Centers, the separate provider-operated DDS group home system is apparently not subject to the vaccination mandate.

It is not clear how many staff in the DDS group home system remain unvaccinated. As of last April, the last time EOHHS apparently tracked staff vaccinations, less than 50% of staff in state-operated DDS group homes were fully vaccinated, and only 51% of staff in provider-run group homes were fully vaccinated.

Administration officials not commenting

On October 14, we emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) with questions about the reports of closures and consolidations in the state-operated group home network.

To date, Ryder has not responded to our query. A spokesperson for EOHHS said we would have to file a Public Records Request for that information.  On October 15, we filed a Public Records Request, and EOHHS responded that same day that that agency did not have any records relevant to our query.

DDS regulations may be violated by sudden closures

Under DDS regulations (115 CMR 6.63), DDS clients cannot be transferred without a 45-day notice and the opportunity for a hearing unless the the Department determines that the transfer is “an emergency involving a serious or immediate threat to the health or safety of the individual or others.”

Western Mass DDS staff urge Ryder to address staffing shortages

Meanwhile, on Wednesday (October 20), the Massachusetts Nurses Association, a union that represents nurses in the DDS system as well as hospitals around the state, reported that several DDS employees in western Massachusetts had sent a letter in late September to Commissioner Ryder “imploring her to intervene in a growing patient-care crisis that is unfolding in many of the region’s DDS group homes.”

The letter stated that staffing shortages in both state-operated and provider-operated group homes were causing “significant increases” in client injuries requiring emergency room treatment, and in the placement of untrained staff in homes.

The MNA letter said some staff were being forced to work overtime due to staffing vacancies, and that one staff worker was reportedly required to work 48 hours straight.

The MNA letter to Ryder was dated September 21. The union said that as of October 20, Ryder had not responded.

COVID rates in the DDS group home system continuing to climb slowly

In the midst of the continuing staffing and apparent vaccination problems, the latest online COVID testing report from EOHHS shows a slow, but continuing increase in individuals testing positive in DDS state and provider-run group homes. In state-operated group homes, the number of residents testing positive rose from 3 to 6.

Among staff in the state-operated group homes, the number of those testing positive rose from 11 to 12 between September 7 and October 5.

In provider-run homes, the number of residents testing positive jumped from 31 in September to 49 in early October. The administration, however, does not report the number of staff testing positive in the DDS provider-run system.

Census in state-ops and ICFs declining

Whether or not there are plans to close state-operated group homes or the Wrentham or Hogan Developmental Centers, the administration has nevertheless been letting the residential populations or census drop in these facilities. In addition, funding for these facilities has dropped or has remained flat for years. (See here and here.)

Documents provided by DDS on September 21 in response to a Public Records Request for records on the number of admissions to state-operated group homes, confirm that the census in those facilities has been declining since Fiscal Year 2015. We previously received information from DDS showing a decline in the census and virtually zero admissions in 2019 and 2020 at the Wrentham and Hogan Centers.

The census in DDS provider-operated group homes grew by an average of 124 residents per year between Fiscal Years 2008 and 2021. However, the census in state-operated group homes grew by an average of only 3 residents per year.

Moreover, since Fiscal 2015, the census in state-operated group homes has actually dropped by an average of 18 residents per year while the census in provider-operated group homes has continued to grow by an average of 83 residents per year. The number of residents in state-run group homes was almost 10% lower in Fiscal 2021 than in 2015.

The data show there have been admissions each year to the state-operated homes.  But those admissions have apparently been more than offset by deaths in those residences.

Future is concerning

In sum, all of these numbers and trends are concerning, as is the administration’s policy not to respond to questions either from us or from unions such as the Mass. Nurses Association.

We may learn a little more if DDS does provide records relevant to our Public Records Request concerning the reported state-operated group home closures.  But in the meantime, we are left to wonder what the administration is planning to do – or is actually doing — to address the staffing shortages in the DDS system.

At the very least, we hope the administration doesn’t view the staffing shortages and the problem of unvaccinated staff as opportunities to further downsize the state-operated group home system.

Video has a controversial and disturbing, but important message about autism

October 8, 2021 4 comments

Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.

The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.

The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.

Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”

The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.

It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.

As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”

And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.

But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.

We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.

Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.

Attacks on guardianship

The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). SDM is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, and living arrangements, and in other areas.

In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.

Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:

People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.

Integrated employment

The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.

The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.

It’s all about money and privatization

The ideological position that the community-based system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.

But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”

As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.

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