Home > Uncategorized > ‘Real Lives’ bill gets more real

‘Real Lives’ bill gets more real

A redraft of a bill that calls for “self-determination” in services for persons with developmental disabilities in Massachusetts  no longer calls for creation of a fund that would subsidize corporate providers to the Department of Developmental Services for not providing services.

In addition, the redraft of the “Real Lives” bill by the office of  state Senator Michael Barrett, co-chair of the Children, Families, and Persons with Disabilities Committee, appears intended to ensure that an advisory board  that would be established under the bill would not be dominated by providers.  According to the redraft, more than half the membership of the advisory board must consist of family members and other participants who are “financially independent” of any provider of services to DDS clients.

Among those specifically named to the advisory board would be the state auditor and inspector general.

The “Real Lives bill,” which was originally sponsored by state Representative Tom Sannicandro and then state Senator (now Congresswoman) Katherine Clark, is intended to give individuals more choice and say in the services they receive from the Department of Developmental Services.   COFAR was among a number of organizations invited earlier this year by Barrett’s staff to comment on the redraft of the proposed legislation.

It isn’t clear when the full Children and Families Committee will vote on the redrafted bill.

Self-determination or “self-directed services” are part of a national movement in care of the disabled that is intended to provide individuals with “opportunities and experiences that enable them to exert control in their lives and to advocate on their own behalf,” according to the American Association of Intellectual and Developmental Disabilities. Under the redrafted Real Lives bill, individuals with developmental disabilities or their guardians would be given a certain degree of authority to develop their own state-funded budgets from which they could select and “purchase” services identified in Individual Care Plans (ISPs).

While we at COFAR still have a number of concerns about the bill, we support many of the changes in the redraft, including the removal of a proposed  “contingency fund” in Sannicandro’s and Clark’s  previous version, which would have been used to inappropriately subsidize providers that lost residential clients who had chosen to live elsewhere.  In effect, as we’ve argued, the fund would have subsidized providers for not providing services.

We also strongly support provisions in the redraft that require disclosure of services and supports available to participants as well as information that would enable participants to chose among providers and programs.

It is not clear what the positions of the major provider-based advocacy organizations in the state – notably the Arc of Massachusetts and the Association of Developmental Disabilities Providers – are regarding the current version of the bill.  Both organizations were in support of the previous draft of the bill, which we had strongly objected to.  Neither the Arc nor the ADDP appear to have commented publicly on the redraft by Barrett’s office.

Our main concerns concerning the redraft of the bill (as well as with the original version of the measure) are the following:

  • It is not clear to us how “self-determination,” as defined in the redraft of the bill  is substantially different than the current ISP process as specified in current laws and regulations.   
  • The bill should include a requirement that participants in self-determination be provided with the explicit choice, as specified in federal law, of all residential options, including Intermediate Care Facility (ICF) and state-operated group homes, in addition to other forms of community-based and home-based care. 
  • The bill should make it clear that in cases in which a developmentally disabled person has a legal guardian, all decisions regarding supports and services would be made by the guardian and not the incapacitated individual.
  • The bill would establish positions, such as “independent facilitators,” which might be duplicative of existing state positions, such as service coordinators.  We think the independent facilitator positions should be removed from the bill.
  •  The bill essentially puts money into the pockets of people who are disabled, potentially making them targets for exploitation.

In some key areas, the redraft is a major improvement over the original version of the bill, which had specified that members of both the Association of Developmental Disabilities Providers and the Arc of Massachusetts, an organization affiliated with the ADDP, would sit on the advisory board.  The advisory board would also have included a number of community-based advocacy organizations that share the Arc’s and ADDP’s support for privatizing state-run services for the developmentally disabled.

This same provider-dominated advisory board in the original bill would have been authorized to “assist” DDS in developing the contingency fund, mentioned above, which would have provided subsidies to the providers.  Under the original version of the bill, the fund would have been “comprised of 40% of the savings from the closure of Monson, Glavin and Templeton (developmental centers)….”

The redrafted bill removed the contingency fund entirely from the measure and states that the advisory board:

… shall have 21 members, including but not limited to participants, family members, legal representatives or guardians of participants, financial management services, independent facilitators, providers of direct services, supports and goods, department staff, members of advocacy organizations, members representing general taxpayers, and independent experts on consumer decision-making, consumer finance, self-determination models, nonprofit and for-profit services markets and competition, and services for persons with disabilities; provided, however, that more than 50 per cent of the advisory board shall consist of participants, family members, independent experts, members of organizations representing general taxpayers, and other persons financially independent of any entity providing direct services, supports or goods to persons with disabilities…

There is no longer any mention in the redraft of the Arc or the ADDP.  Nevertheless, we foresee some problems in the setup of the board as it is described in the redraft.

Under the redraft, the advisory board would still be chosen by DDS, which has long maintained close ties to the Arc and the ADDP.  It may be a matter of interpretation as to what is meant by “persons financially independent” of any provider-based entities.  DDS might still load the board with members of advocacy groups who may have no explicit financial ties to the providers, but who are nevertheless advocates of privatized services.

We think it might be best to scrap the advisory board altogether in the bill and encourage DDS to seek advice and guidance from all stakeholders in public hearings in developing a self-directed services program.  That would open up the process to all public input and make it more transparent as well.

Also, the chief justice of the probate court as well as the district attorneys across the state should be consulted for their input on the bill.  The probate court will have a natural interest in proposed legislation that may potentially limit the role of guardians.  As currently written, the bill “does an end run around the guardianship statute,” according to Thomas Frain, an attorney and COFAR Board president.

Frain also maintains that the district attorney’s offices should be consulted “for the inevitable exploitation of intellectually disabled people that will arrive along with this next chapter in the self determination story.  Although improved following its review by Senator Barrett and his staff, the bill appears to be yet another attempt by corporations to divert more taxpayer monies into their own pockets, regardless of whether any of it actually gets to the intended beneficiaries: the intellectually disabled,” Frain maintains.

We hope Senator Barrett’s improvements hold up at the very least, and that further improvements are made in this bill as it comes out of the Children and Families Committee and moves through the House and Senate.

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  1. D
    March 16, 2014 at 3:09 am

    Speaking of transparency.. Where do the funds that pay your salary come from?
    Real Lives is one more step to families having more control of the decisions being made about the future of their loved one with a disability. The number of families taking care of their children with a disability is growing. Not all families want traditional services nor are they asking the state to fully fund the needs of the individual. Families are being more creative with a variety of supports and resources, including those they pay for to give their loved one opportunities for a greater life. There must be more important things for COFAR to address than to analyze a bill that focuses on individuals with disabilities. Provide us with concrete information on an existing policy, program, service or law that is 100% for the person. Your concern really isn’t about the Real Lives bill. COFAR will never be satisfied, unless of course, the state were to reopen state institutions and eliminate all resources that would enhance individualized supports.

  2. March 16, 2014 at 3:07 pm

    I don’t know who you are, D, but you appear to be misinformed about COFAR and our positions. First, COFAR’s funding comes from other advocacy organizations and from families. Secondly, we support individualized supports and community-based care. We also support so-called traditional services for those who need and want them.

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