COFAR blog

Last week’s House budget debate on the Fiscal 2017 state budget showed just how little, in the way of funding increases, programs for the developmentally disabled will get next year.

In that regard, the House debate was an initial test of the Legislature’s willingness to do better than Governor Baker has with his proposed Fiscal 2017 budget.  The House showed it wasn’t willing to do very much.

With the exception of privatized services and one or two other programs, such as family respite services, neither Baker nor the Legislature seem to have put a priority lately on services for the developmentally disabled.

It’s tempting to think of what could be accomplished if some of the state’s $80 million film tax credit, for instance, were diverted to agencies like the Disabled Persons Protection Commission.

Governor Baker’s 2017 budget actually proposes level-funding the DPPC, which is the only state agency in Massachusetts devoted exclusively to preventing and investigating abuse and neglect of disabled persons.  A zero increase in nominal dollars would actually amount to a cut in that agency’s budget when adjusted for inflation.

After House leaders last week rejected amendments proposing as much as a $1 million increase for the DPPC, the House did approve an amendment for a $100,000 boost in the agency’s $2.9 million budget.  When adjusted for inflation, that would amount to an increase of about 1.5 percent.

As we reported last year, the DPPC has been beset by a chronic lack of adequate funding over the past decade and a maze of legal constraints.

State-run DDS programs will get little or no increases

The governor and now the House have also shown scant interest in raising the level of funding for state-run programs for the developmentally disabled, particularly commonwealth-operated group homes.

We had asked a legislator, on behalf of some of her constituents, to file an amendment to boost funding for the commonwealth group-home line item.  The legislator’s constituents happen to have a family member in a commonwealth-operated group home, and they are concerned about the flat or declining level of funding for those facilities.  The legislator, at the last minute, declined to file the amendment.

In his budget, Baker proposed less than a 2 percent increase in funding for the commonwealth-operated group home line item, which would also amount to a cut in inflation-adjusted terms. Last month, I asked Department of Developmental Services Commissioner Elin Howe about that. While Howe admitted the funding proposed for the commonwealth group homes is inadequate, she said DDS did not intend to seek an amendment in the House budget to increase that funding.

We believe the governor proposed about $500,000 less for the commonwealth-operated group homes than what DDS itself believes is needed.  Howe’s response to us, however, was, “We’re just going to have to manage it.”   It appears that the DDS mindset is that eventually the commonwealth-operated programs will be privatized, so it is not worth pushing for more money for those programs.

Also rejected by the House last week was an amendment that would have provided for a $3.4 million increase in the DDS administrative line item, which funds DDS service coordinators.  The governor and House Ways and Means Committee have together approved only a $400,000 increase in that line item, which actually amounts to a 1.2 percent cut when adjusted for inflation.  The line item for the service coordinators, like the line item for DPPC, has been continually underfunded despite rising caseloads in recent years.

Privatized DDS services

Corporate provider-operated residential services is one of the few areas in which Baker has continued to propose increased funding.  In that case, we agree with the House, which apparently considered Baker’s proposed $26 million increase in the corporate provider residential line item to be enough.  House leaders rejected an amendment that would have boosted the line item by $6.5 million over the governor’s increase.

The House similarly rejected amendments for increases, above what the governor had proposed, in both the community-based day care line item and a pilot program to fund transfers from sheltered workshops into community-based day care. Baker had actually proposed a $4.6 million increase in that particular program, but the House Ways and Means Committee rejected it.

When it comes to privatized services, we’ve said before that the budget is out of balance.  The corporate provider residential line item has been increased too rapidly, at the expense of almost all other DDS programs.

We’ve also opposed the closures of sheltered workshops throughout the state, and the transfer of that funding to day care programs.

The increases that the House did approve

There were a few amendments that were accepted last week to increase funding:

The House did approve $50,000 to further expand Operation House Call.  As we’ve reported, the program, which is run by the Arc of Massachusetts, provides instruction to students in medical and nursing schools in Massachusetts on treating people with autism and other developmental disabilities.

Operation House Call appears to be a good, though limited approach to addressing the lack of training of health care professionals.  We were supporting a bill requiring a more comprehensive approach to the problem.  Last month, the Public Health Committee approved that bill. But the committee then quietly approved substitute language to the bill to expand Operation House Call, and dropped the more comprehensive program.

Family supports, as mentioned, was one other area where Baker actually proposed more than a token increase in funding for next year.  His Fiscal 2017 budget calls for a $6.8 million, or 12 percent, increase in that line item.

The House last week approved an additional $100,000 increase in the family support and respite line item and earmarked that increase for persons over 40.

Those proposed increases in funding for family supports are good moves.  But in the final analysis, we believe the governor and Legislature need to rethink their priorities when it comes to budgeting services for the developmentally disabled.

The Massachusetts Legislature already has a reputation for a lack of transparency in the way it does business; and a case involving a bill that would provide training for medical personnel in dealing with developmentally disabled persons would seem to enhance that reputation.

The bill was quietly changed last week by the Public Health Committee without a vote — and the change appears to have greatly reduced the scope of the bill and benefited the politically connected Arc of Massachusetts.

We’re not blaming the Public Health Committee for going rogue on this matter.  In fact, it appears the chairs of the Committee were doing business as usual in the Legislature, and taking their marching orders from politically connected lobbyists and who knows who else.

Last month, the Public Health Committee appeared to have demonstrated that needed legislation does occasionally move forward in the Legislature.  The Committee approved what we considered an important bill (H. 1932) that would have required training of health care professionals who deal with developmentally disabled persons.

The bill had sat in the Committee for more than a year, but Representative Kate Hogan and Senator Jason Lewis, the co-chairs of the committee, made sure that the bill got voted on before the session deadline on March 17.  Had they not acted when they did, the bill would have died. (That was the case with a key guardianship bill in the Judiciary Committee.)

H. 1932 first came to our attention some months ago when we were fighting with the Department of Public Health for a copy of an investigative report on a developmentally disabled man who died after being turned away twice from Lowell General Hospital. While the DPH report exonerated the hospital in the case, it also left a number of questions unanswered, including whether the emergency room staff at the hospital was trained to deal with people with developmental disabilities.

In many cases, developmentally disabled people are nonverbal, and even in cases in which they are verbal, they may report medical symptoms differently than do non-disabled people.

H. 1932 seemed to potentially address those problems in requiring that medical and other professionals to receive training in dealing with people with developmental disabilities. Given that the bill was still stuck in the Public Health Committee as of early March, I asked Rep. Hogan about the legislation during a meeting we had with her in her district office.  Hogan’s aide said she would look into getting the bill out of the committee.

That appeared to be what happened.  On March 21, I received a message from Hogan’s aide, saying H. 1932 had been reported favorably by the Committee.  This seemed to be good news, particularly compared with what had happened at the same time to the guardian bill.

But in checking the Legislature’s online bill site earlier this week, I saw that the Public Health Committee had made a quiet substitution to H. 1932.  On April 7, the Committee had substituted a new bill (S. 2211) for the bill it had reported out favorably.  This new bill would expand a voluntary training and accreditation program that is geared toward medical and nursing schools. The existing program, known as Operation House Call, has been run by the Arc of Massachusetts for several years. The program provides instruction in treating people with developmental disabilities in hospital settings, including people with autism.

Here’s the key from the Arc website:  “All of the participating (medical and nursing) schools provide funding toward Operation House Call.”  So this appears to be an expansion of a program that has provided funding to the Arc.

The program as described in S. 2211 appears to be a good program, but it appears to be more limited in scope than H. 1932, and more limited than what had been envisioned in a second bill (S. 1180), which had also been in the Public Health Committee.  That second bill would have required DPH to provide training on autism to physicians, emergency room personnel and other health care professionals.  S. 1180 would also have required DPH to design a pilot program for an “autism team” in hospital emergency rooms.

H. 1932 had further contained broad language that would have required the Executive Office of Health and Human Services (EOHHS), to evaluate discrimination against developmentally disabled persons and to issue regulations to reduce the impact of “disparities in outcomes” for those people in medical settings.  As we reported, there have been a number of studies showing such disparities in outcomes for people with developmental disabilities.

In our view, this whole episode is a case study in how even good legislation gets put together in secret in the Legislature, and how certain organizations like the Arc so often seem to benefit from it.  We say this was done in secret.  Clearly the Public Health Care Committee voted on one bill, and then another bill was quietly substituted for it by unnamed parties with no vote.

Now the substituted legislation goes to the Health Care Financing Committee, where it may secretly get changed again, very possibly to provide even more benefits to politically connected lobbyists.

The Inspector General’s Office for the U.S. Department of Health and Human Services has responded to our questions about the methodology underlying their report on abuse and neglect in residential facilities for the developmentally disabled in New York State.

As a spokesperson for the Office put it, in an email accompanying the Office’s responses, “I think you will see we were quite thorough in our work.”

I’ll summarize the Office’s responses below.  But we have to disagree with the suggestion that this report was thorough.  A six-page report (actually four pages if you leave out the methodology section) that contains no recommendations concerning a subject as serious and complex as abuse and neglect in a system with thousands of residential facilities and tens of thousands of program recipients cannot by definition be thorough.

As we noted previously, Senator Chris Murphy of Connecticut had asked HHS Inspector General Daniel Levinson in 2013 to investigate the privatized group home system around the country in the wake of exposes in both The Hartford Courant and The New York Times that revealed horrendous cases of abuse and neglect in group homes in their respective states.

A group home in Hudson Falls, NY, where a worker allegedly sexually assaulted a developmentally disabled woman, according to a New York Times report

The report released by the IG on New York State’s residential system is the first of three reports that the Office plans to issue in response to Murphy’s request.  Two additional reports are expected to be released, based on similar reviews in Massachusetts and Connecticut.

What the IG actually did in the first report was to conduct a review of the outcomes of hospital emergency room visits by residents of a selected sample of 12 Intermediate Care Facilities (ICFs) in New York State.  Those 12 ICFs were selected because more than 70 percent of the residents in each of the facilities had had an ER visit in 2012 and 2013.

While some of the ER visits were due to alleged abuse and neglect, the IG concluded that the incidents were reported to the appropriate agencies, and that the “vast majority” of the ER visits were due to underlying medical conditions of the residents.  The report noted that it contained no recommendations, and essentially concluded that the IG had found nothing wrong in the system.

Senator Murphy has not responded to queries from us as to whether he is satisfied with the IG’s work so far in response to his call for the investigation.

Below are the key questions we posed to the IG about the New York report and a summarization of the IG’s responses (not necessarily in the order we posed the questions):

1. What about deaths?

As we previously stated, the IG’s review appears to have been limited to outcomes of persons sent to ERs from a sample of ICFs. Sen. Murphy’s letter to the IG in 2013 specifically requested that Levinson investigate preventable deaths in group homes. In limiting his review to persons taken to ER’s, didn’t Levinson’s study miss deaths in which no one was taken to an ER?

The IG’s response stated that they reviewed all reported deaths involving the 109 residents of the facilities examined during the audit period.  There were a total of 12 reported deaths among the residents in seven of the 12 ICFs.  All 12 reported deaths were from natural causes, the IG stated.

This response demonstrates to us just how limited the selected sample of facilities was that the IG chose to review.  The New York Times reported in 2011 that 1,200 deaths in group homes in the past decade “have been attributed to either unnatural or unknown causes.”

In 2013, The Courant reported “dozens of developmentally disabled people who died in public and private group homes, institutions and nursing homes from 2004 through 2010 in cases where investigators cited abuse, neglect or medical error as a factor.”

As we noted, ICFs are a distinct category of residential facility for the developmentally disabled. They are required to meet strict federal standards for care under the federal Medicaid statute, and tend to serve profoundly disabled and medically involved people.

Also, it’s not clear how many, if any, of the ICFs examined by the IG actually were group homes. Many group homes operate under the Home and Community Based Settings (HCBS) waiver to the federal Medicaid statute, which exempts those homes from ICF requirements.

In their response, the IG’s Office stated that they first used a state computer database to identify Medicaid claims submitted by more than 1,100 residential providers for close to 41,000 intellectually disabled Medicaid beneficiaries in New York State.

The IG then determined that close to 23,000 of those beneficiaries had some 146,000 ER visits charged to Medicaid totaling $1.6 million.

The IG next determined that those beneficiaries resided in 33 state-operated and 395 privately operated ICFs.  Of that total of 428 ICFs, the IG selected 12 for which more than 70 percent of the residents had had an ER visit.  The review involved 109 residents of those 12 ICFs.

But it still isn’t clear to us how many, if any, of the facilities reviewed were actual group homes, which tend to have 6 residents or fewer in them, or why the IG appears to have limited their review to ICFs.

In their response, the IG stated that four of the 12 ICFs in their sample were actually “HCBS Waiver ICFs.”   I sent the IG’s Office a follow-up email to try to clarify this.  As I noted, it is our understanding that a group home or other facility that operates under the HCBS waiver is not considered an ICF, but is an “alternative” to an ICF.   I haven’t yet received a response to that request for a clarification.

The IG’s Office also hasn’t responded to a second follow-up question as to how many, if any, of the 12 ICFs reviewed were actual group homes.  Senator Murphy had asked for an investigation of group homes.

3. Could there be an overlooked variable biasing the results as a result of the IG’s methodology?  For instance, might a group of ICFs have a high percentage of patients admitted to ERs because those are the ICFs with the most medically fragile patients?

The IG’s response to this was that “the entire population in ICF’s is a fragile population,” and that “no bias was involved” in their method of selecting the 12 ICFs for review.

But this answer doesn’t respond to the question, which assumes that there are some differences in the average degree of medical fragility of residents in different ICFs.  Our guess is the IG’s sample is likely to have consisted of the ICFs housing the sickest residents on average. Those residents would be the most likely to die of “natural causes” rather than abuse or neglect.  So that might provide one reason why the IG did not find evidence of abuse or neglect in the deaths of the residents in those facilities.

3. Why did the IG look at data for only two years — 2012 and 2013?  Shouldn’t the IG have examined data over at least a 10-year period?

The IG’s response was that the process of identifying the Medicaid claims for 41,000 beneficiaries over two years took “a great deal of time and manpower,” and that the Office didn’t have the time or resources to do more.

5. Did the investigators interview staff, families etc. in any of the facilities?

The IG responded that all 12 ICFs were visited and that staff and beneficiary records were reviewed.  Apparently no staff or family members were interviewed.

In critiquing this report, we’re not trying to criticize the IG’s other investigations or audits of the health and human services system.  We think the IG took the wrong approach to this particular investigation.  It was an approach that took them nowhere, and the report reflects that.  To that extent, it was a huge missed opportunity.  As we noted in our last post, federal investigations of the privatized group home system have been few and far between.

Rather than using a questionable methodology to try to come up with their own data on abuse and neglect, the IG could have reviewed existing records on abuse and neglect that are available in state agencies in New York State.  At the very least, the IG could have tried to confirm the findings of the Times and the Courant.  Better yet, they could have looked at what actions have been taken in each state to address the newspapers’ findings, and whether those actions have resulted in any improvements that might have been reflected in the state agency data.

It probably goes without saying that the IG should have interviewed families of residents of the facilities they examined.

Despite any implications that might be drawn from the IG’s New York report, we’re sure the problem of abuse and neglect in the group home system has not gone away.  A systematic federal investigation of this problem is still sorely needed.

It’s hard to believe the Inspector General for the U.S. Department of Health and Human Services has come up with a report about abuse and neglect of the developmentally disabled in New York State that doesn’t have any recommendations in it.

And it’s hard to believe that U.S. Senator Chris Murphy of Connecticut, who had asked for the IG investigation, is okay with this report.  Well, we don’t really know how he feels about it.  We have been unable so far to elicit a comment from his office about it.

The IG took two and a half years to do this report, which was released last September (although we have only now seen it), and the results seem cursory to say the least.  Moreover, the methodology the IG used in the 6-page report (that page count includes an appendix on that methodology) seems questionable.

Based on that methodology, the IG essentially found no problems in New York’s group home system.  Well, it’s not clear exactly what types of residential facilities were actually examined. More about that and the IG’s methodology below.

We understand that the IG has not yet released additional reports done on Connecticut and Massachusetts, also in response to Murphy’s request.  But if those latter reports have employed the same methodology and lack of apparent rigor as the report on New York, we would expect to see similar non-findings and non-recommendations in them.

In March 2013, Sen. Murphy had asked the IG to investigate the privatized group home industry around the country in the wake of major newspaper exposes in both his state of Connecticut and in New York State about poor care and worse in those facilities.

Both The Hartford Courant in Connecticut and The New York Times had found numerous instances of horrendous abuse and neglect (here and here) in the group home systems in those states that resulted in many cases in deaths of disabled people and serious injuries.  In case after case, vulnerable and disabled people were found to have been subjected to sexual and other types of assaults, inadequate care, and substandard conditions in facilities with underpaid and poorly trained staff.

As the Times noted in one of its articles, while the staff of these group homes may have been poorly compensated, the executives of the state-funded companies running the homes were often generously paid.

While the privatized group home industry sprang up in response to reports of abuse and neglect in large institutions in the 1970s, the Courant and Times articles, and many similar media exposes in other states, have more recently raised the question whether group homes have become the new warehouses for developmentally disabled people.

To give Murphy credit, he was one of the few prominent elected officials to express public concern about the group home industry in the wake of the Courant and Times exposes.  In 2013, shortly after he was elected a senator in Connecticut, he seemed to be outraged by the Courant’s findings, in particular.  He wrote a strong letter to Daniel Levinson, the HHS IG. Murphy’s letter opened by stating:

I write to you today to request that you undertake an immediate investigation into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes. In particular, I would like you to focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.

Citing accounts of abuse and neglect in Connecticut, New York, Massachusetts, Virginia, Louisiana, and Texas, Murphy’s letter added:

These examples and countless others from across the nation are indicative of a larger problem of the race to he bottom in our health care system. Privatization of care may mean lower costs but without the proper oversight and requirements for well-trained staff.

Murphy’s letter to Levinson noted that prior to his becoming a U.S. senator, he had led the charge in the Connecticut Legislature in 2005 to enact a moratorium on conversations of state-run group homes into privately run residences, which are nevertheless publicly funded.

Since 2013, however, Murphy seems to have gone silent on this issue.  His office has never responded to queries from us in the past two years about his call for the IG investigation, and we’ve received no response to a call to Murphy’s office last week and to an email this week, asking if Murphy is satisfied with the IG’s work so far.

ICFs in New York with high rates of ER visits by intellectually disabled Medicaid beneficiaries under their care reported … these visits, as required, and potential neglect or abuse was reported and investigated (by the appropriate state agencies). However, the vast majority of ER visits we reviewed resulted from circumstances associated with the Medicaid beneficiaries’ underlying medical conditions—not from neglect or abuse. Accordingly, this report contains no recommendations…

In written comments on our draft report, the health department stated that it was pleased that we had no recommendations.