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Monthly Archives: April 2013

Senate Bill 1361 is being heard by the Senate Health and Human Services Committee on Tuesday, April 23rd.  This is a bill that seeks to establish a bill of rights for persons receiving long-term services and supports under Medicaid programs.  As we seem to be moving inexorably towards managed care, this is a short, four-page bill that establishes some important principles especially for individuals with intellectual and developmental disabilities (see the text here: ). 

If passed, this legislation puts the following principles into state law:

  • Individuals have the right to live as independently as possible
  • Individuals have the right to control their own lives
  • Individuals have the right to receive services and supports to secure and retain employment
  • Individuals have the right to be able to self-advocate or receive that help from family or guardians
  • Individuals have the right to be involved in system redesign
  • Individuals have the right to receive services and supports that address individualized needs, that close the gaps that exist in current services and supports, that are part of a quality management process, that are overseen by qualified staff with decision making powers, and that are accessible and transparent.
  • Individuals have the right to select their own qualified provider
  • Individuals have the right to have access to both institutional and home/community-based services and supports
  • Individuals have the right to retain existing health care coordinators and physicians
  • Individuals have the right to periodically change health care providers, coordinators, and managed care programs
  • Individuals have the right to be fully informed about their rights and obligations
  • Individuals have the right to have access to grievance procedures

 I realize this is a philosophical document.  However, if passed it provides the foundation behind any system changes to long-term services and supports.  Many people are concerned about their loved ones being swallowed up by soulless managed care programs that are more concerned about efficiency and bottom line than in the people they care for, legislation like this would help to reassure guardians and family members that the state has some compassion and interest in taking care of this vulnerable population.

To contact members of the Senate Health and Human Services committee, click here for a list of members: .


I’ll be conducting a fitness program for children with Down Syndrome beginning in June.  It’s going to run on Saturdays from 2 until 3 at St. Gabriel’s Catholic Church in McKinney, TX.  St. Gabriel’s is graciously letting me use their gymnasium for this program.  Thanks to their generosity, this program is being offered at no charge to families of children with Down Syndrome.

I have several goals with this program.  First, to get these kids moving and active.  I don’t think kids in general respond well to structured exercise programs (for example, do three sets of ten crunches) so we’ll be approaching this through movement activities and games that they should find fun.  Second, I’d like to convince family members that their kids can enjoy movement and that it is not difficult to incorporate this into their lives.  Finally, it’s a great opportunity to socialize everyone and get past some of the scare factor that can be associated with working with special needs individuals.

The program information, along with a registration flier, can be found at: program information

There are several important bills that have on the state supported living centers (SSLC’s) that have been filed in the Legislature this session.  All of these bills have been filed and referred to committee, but all the bills are just sitting there waiting for a committee hearing.  These bills deal with the following topics:

  • Creating a SSLC realignment commission
  • Evaluating the SSLC system
  • Developing criteria for the closure or consolidation of the SSLCs


Creating a SSLC realignment commission:

In the Senate, SB 729 by Rodriguez seeks to create a SSLC realignment commission. In the house it is HB 3528 by Klick.  These bills would establish a realignment commission to evaluate and make recommendations regarding the operation and management of the SSLCs, would make recommendations on the consolidation or closure of SSLCs based upon criteria established in the bill, and oversee the implementation of its recommendations.  Members would be appointed by the Governor.


Evaluating the SSLC system:

In the Senate, SB 1045 by Rodriguez and in the House HB 3312 by Collier seek to direct the Health and Human Services Commission to contract with an outside entity to evaluate the SSLC system.  This evaluation would include examining the proximity of SSLCs to community service providers, administrative costs of operating SSLCs, availability of employment opportunities for SSLC employees should a SSLC close down, conditions of both the SSLCs and community service providers, capacities of other SSLCs and community service providers should a given SSLC be closed, examining whether specialized services and programs at a given SSLC can be conducted in the community, support needs of residents in a SSLC and whether those are available in the community, etc.  In other words, these bills seek to give decision makers the information that they need to make unemotional decisions about the future of the SSLCs.


Developing SSLC closure criteria:

In the Senate, SB 1766 by Rodriguez and HB 3527 by Klick in the House seek to direct the Health and Human Services Commission to develop a formula-based approach to determining when a SSLC should be closed or consolidated with another SSLC.   These bills also include instructions on how to consolidate the SSLCs provided that seven of the thirteen are closed down.


All three of these bills are important.  The realignment commission develops an independent group to make the decisions.  The evaluation bills provide the information that is needed to make objective decisions about this emotional topic.  The criteria allows the comparison of apples to apples.  None of these bills requires that SSLCs be closed or consolidated, but they do lay the groundwork for this to occur and could perhaps incentivize and improvement in services and supports.

None of these bills are currently scheduled to be heard in their committees.  If this is something that you feel strongly about, contact the members of both committee about this.  To find the members of the committees, click on the following:

Senate Health and Human Services Committee membership:

House Human Services Committee membership: