(Cross-posted from The COFAR Blog)
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.
