THIS IS NOT JUST ABOUT RESPITE CARE! Its about providing a variety of flexible home and community supports that help families stay together and help people with disabilities or chronic illnesses live outside of institutions.
Good supports are essential for people with disabilities or chronic illness to live in their own homes, not institutions, and to keep their families together but government has not made this a priority;
Increasing consumer involvement in the planning and evaluation of supports will help eliminate inappropriate, wasteful or badly run services;
Current program structures are not flexible enough to meet unique needs;
Existing supports are not coordinated and this places additional burdens on people who rely on them.
We most recently filed the bill in both houses simultaneously in
December 1998. Unfortunately, the bill was not passed during this past
legislative session. We will re-file the bill this Fall and it will be
assigned new bill numbers .
This legislation was initially filed for the 1992 legislative session with Chairman Paul Kollios as the lead sponsor. The concept of Massachusetts Families Organizing for Change was a new one, so many of the accomplishments and progress of this piece of legislation may appear subtle; however, if one looks just beneath the surface, the accomplishments have been profound.
In 1992, few legislators had ever heard of Families Organizing for Change. People were confused as to what they "wanted" and were unclear as to their mission.
By 1995, this bill had been chosen by the Joint Committee on Human Services as one of two priority bills ( the other being Assisted Living) to recommend to the Speaker for passage.
The following progress has taken place:
In 1994, in addition to Chairman Paul Kollios, Representative McIntyre of New Bedford had taken the lead. on several occasions, Representative McIntyre met with the then DMR Commissioner Philip Campbell and David Shapiro, Chief of Staff for the House Ways and Means Committee, to sort out what problems might be in the bill. David Shapiro identified a number of issues that he saw as problematic, primarily around the fear that the ill would be seen as an entitlement.
In response to this, a sub-committee of the Families Organizing for Change met and drafted a version that was more in line with Mr. Shapiro's recommendations. this version was being considered by the Ways and Means Committee. however, the House Ways and Means Committee continued to ask " why can't this be done administratively?''
this led to a number of meetings with then Secretary of Health and Human Services Charlie Baker. as a result, Baker, now the head of A & F, has become a champion of S1731 and has spoken of his support at several public forums. In fact, he instructed both Commissioners' Philip Campbell of the Department of Mental retardation and David Mulligan of the Department of Public Health to develop an implementation plan to identify what the implications would be if this piece of legislation were passed.
The Department of Mental Retardation has learned a great deal from the Families Organizing for Change and has implemented many of their suggestions.
However, family supports are still uneven throughout the state and points out the important and vital need for such a piece of legislation. Also, there is no protection for family support should we have a less favorable administration.
Charlie Baker spoke of the possibility of this bill going through in 1994. With the passage of the national Family Support Act in Congress in the same year, it was not out of the realm of possibility. Legislation once again ended in the House Ways and Means Committee.
Families Organizing for Change continued to press for passage of this legislation throughout 1995. Parts of the bill were included in the FY '96 budget document, outside Section 236, calling for Departments of Mental Retardation, Public Health and Education to develop three regional pilot projects with coordinated, substantial family driven networks of supports for families with school age or younger children with developmental disabilities or chronic illness.
Interagency agreements were signed with the Department of Mental Retardation as the lead agency. The three sites are:
In the 1996 Legislative Session, the pilots were again mandated. An evaluation of the first year pilots was completed in October 1996. The pilots were mandated once again in 1997 and they now include Mass Rehabilitation and Mass Commission for the Blind.
During 1996, Massachusetts Families Organizing for Change has decided to focus on the Senate, educating Senators about the needs of families and about the legislation. The group sought and found a Senator interested enough to champion the legislation. Sen. Mark Montigney became the sponsor and with Sen. Stan Rosenberg of Amherst was instrumental in getting the bill passed in the Senate during the final two weeks of the session. The bill did not pass out of House Ways and means.
Representative Kollios, our original sponsor, retired and Representative Patrick Guerriero ( R- Melrose) has become our lead sponsor.
in 1997, the bill was one of the top five that passed out of the Senate Ways and Means Committee within a three month period. Senator Rosenberg of Amherst and Senator Mark Montigny were once again providing leadership in the Senate. When the bill passed out of the Senate, the number and name of the bill changed. it is now, " An Act Further Regulating Certain Supports To Be Provided to Individuals with Disabilities or Chronic Illness and Their Families". Senate Bill 1731. This bill has been the priority of the MDDC for three years.