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Minutes — Council Meeting, May 7, 2010

(As Approved by the Council August 6, 2010)

Attendance

Call to Order

The Texas Council for Developmental Disabilities met on Friday, May 7, 2010, in Salon C & D of the Marriott Austin South Hotel, 4414 South IH-35, Austin, TX 78744. Council Chair Brenda Coleman-Beattie called the meeting to order at 9:06 AM.

Introductions

Council members, staff and guests introduced themselves.

Public Comments

No public comments were offered.

Consent Items

Chair Coleman-Beattie asked for a motion to approve minutes of the February 2010 Council and Committee of the Whole meetings as well as excused absences for this Council meeting.

MOTION: To approve the minutes of the February 11, 2010, Committee of the Whole and the February 12, 2010, Council Meeting and the excused absences of Mary Durheim, Marcia Dwyer, Diana Kern, John Morris and Amy Sharp.

MADE BY: Rick Tisch

SECOND: Kathy Griffis-Bailey

The motion passed unanimously.

Chair’s Report

Coleman-Beattie reviewed upcoming opportunities for Council members to attend conferences related to TCDD business. The NACDD annual fall conference will take place in Orlando, FL, September 27-28 and members who wish to attend this event should notify Coleman-Beattie or Executive Director Roger Webb. The ADD Technical Assistance Institute will take place June 23-25 in Arlington, VA, and Coleman-Beattie expects to make decisions regarding attendance for that event in the next week.

A revised copy of the TCDD Financial Report was provided for members with no substantive changes and now includes additional explanatory footnotes. All Council members are encouraged to review financial statements and seek clarification with staff on any questions.

Executive Director’s Report

Webb reported that the Texas Department of Housing and Community Affairs expects to ask its Board to re-name the Barrier Removal Program for late TCDD Public Policy Specialist Amy Young. The Board is expect to provide $1.9 million in funds this year to organizations that assist with housing renovations in order to provide accessibility options in approximately 150 residences throughout the state.

Revisions to TCDD Position Statements

Public Policy Committee Chair Rick Tisch reported that the Public Policy Committee reviewed the Right to Privacy, Service Coordination, Guardianship, and Emergency Preparedness Position Statements and proposes a few minor revisions. The Guardianship statement changes the mental retardation terminology to intellectual disabilities and the Emergency Preparedness Statement now includes planning for service animals.

MOTION: To approve the Right to Privacy, Service Coordination, Guardianship, and Emergency Preparedness Position Statements as recommended by the Committee.

MADE BY: Rick Tisch for the Public Policy Committee
(Motions from Committee do not need a second)

The motion passed unanimously. (Attached as approved)

Webb reviewed the purpose of TCDD Position Statements noting that the statements state the Council’s position on these issues and provide guidance for staff members as they engage in advocacy activities. Members also discussed their role in advocating on policy matters.

TCDD State Plan Amendments for FY 2011

Coleman-Beattie requested reports from each Committee concerning possible amendments to the TCDD State Plan for FY 2011. Project Development Committee Chair Susan Vardell reported that Committee had no proposed amendments. Tisch reported the same for the Public Policy Committee. Since no amendments were proposed for TCDD State Plan for FY 2011, the federally required annual submission will be made without amendments.

Process to Develop TCDD State Plan for FY 2012 – 2016

Coleman-Beattie noted that each Committee had discussions following the Committee of the Whole presentation by Planning Coordinator Joanna Cordry on the process to develop the TCDD FY 2012 – 2016 State Plan. Tisch reported that the Public Policy Committee recommends a “strategic” model for the next State Plan which would provide more targeted areas of emphasis but allowing a “reserve” for emerging issues. Vardell noted that the Project Development Committee presents the same recommendation.

MOTION: To develop the TCDD FY 2012 – 2016 State Plan using a strategic model but allowing a “reserve” for emerging issues.

MADE BY: Rick Tisch for the Public Policy Committee & Susan Vardell for the Project Development Committee

The motion passed unanimously. Coleman-Beattie noted that “adjustments” to the Council’s Plan can be made annually during the amendment process.

Consideration of Future Funding Activities

Grants Management Director Patrice LeBlanc presented an overview of the status of funds that are available for grant projects and discussed how staff determine those estimates based on the Council’s estimated federal allotment, operating expenses, funds awarded for current projects and stipends grants or estimated for future years for those projects, and approved plans for future projects. Coleman-Beattie stressed the importance for Council members to be aware of the Council’s overall financial situation and discussed the checks and balances for monitoring finances by the Independent Auditor as well as the Audit Committee. Members were encouraged to always ask questions regarding finances whenever that information is not clear. Webb further explained the role of Texas Education Agency as the designated state agency or “fiscal agent” for the Council.

Coleman-Beattie reviewed the Committee of the Whole recommendation to approve the proposed Executive Summary for Future TCDD Public Policy Collaboration Activities.

MOTION: To approve the Executive Summary for Future TCDD Public Policy Collaboration Activities as presented.

MADE BY: Brenda Coleman Beattie for the Committee of the Whole.

The motion passed unanimously.

Council members reviewed the document that describes Future Funding Priorities. On behalf of the Public Policy Committee, Tisch recommended placing Future TCDD Public Policy Collaboration Activities projects as the top priority. On behalf of the Project Development Committee, Vardell recommended placing that project second on the list, noting that the Higher Education should remain in the first position as actions to begin that project have already begun. Webb and LeBlanc noted that placing this project in the second position does not delay a start of the project because funds are currently available. Tisch agreed to this placement. The Project Development Committee also recommends moving the Enabling Technology Project to #6 and the Parent Transition Guides Project to #7. All other projects remain in the current order.

MOTION: To place Future TCDD Public Policy Collaboration Activities as the second priority, Enabling Technology project as the sixth priority, and Parent Transition Guides as the seventh priority on the TCDD Future Funding Priorities List.

MADE BY: Susan Vardell for the Project Development Committee.

The motion passed unanimously.

Council members then discussed the funding allocated for Future TCDD Public Policy Collaboration Activities. Vardell indicated that the Project Development Committee recommended to not include funding amounts in the Request for Proposals but to project an encumbrance of $300,000 as a “budget assumption” for the first year of activities for planning purposes only, not as a binding amount. The Committee recommends that funds for future years be determined after considering the funding requirements of those projects initially approved for funding. This approach takes into account requirements for increasing match funds for multi-year projects and the need for flexibility for each project.

MOTION: To project an encumbrance of $300,000 per year for up to five years for Future TCDD Public Policy Collaboration Activities projects, with amounts for subsequent years to be evaluated based on project needs.

MADE BY: Susan Vardell for the Project Development Committee.

The motion passed unanimously.

Audit Committee Report

Audit Committee member Andy Crim provided an update and slides on Audit Committee activities. Crim highlighted that the March 27, 2010, Committee meeting included discussion of the recent “quality assurance review” (peer review) of the internal auditor’s activities, requirements for annual independent audits of grant projects, and a review of auditing activities during the current year. The Committee also discussed the process for initiating a Request for Qualifications (RFQ) for internal auditor services for TCDD, noting that it is a good business practice to re-solicit audit services even though TCDD is very pleased with the quality of work provided by the current contracted internal auditor. That procurement will occur this fall. Crim also noted that the Audit Committee discussed a request for and extension of the Disability Policy Consortium project for two months to allow use of unexpended funds from the prior award period. Based on guidance from the Committee, that request is in process of being approved by staff.

Project Development Committee Report

Project Development Committee Chair Vardell reported that the committee discussed the Outreach Consultation Activities which is currently third on the Future Funding Priorities List. The Committee discussed offering a series of small grants to assist organizations that are focus on assisting individuals who are un-served or under-served, specifically those from African-American, Asian-Americans, American-Indians and Hispanic cultures. Funds have already been set aside for these projects consistent with the original Executive Summary.

MOTION: To make available up to $10,000 per applicant for up to one year to implement activities described in the Outreach Consultation Activities Executive Summary through a simplified application process.

MADE BY: Susan Vardell for the Project Development Committee.

The motion passed unanimously.

The Committee also discussed the Higher Education RFP which was posted in December 2009 but did not receive any applications. Texas Education Agency (TEA) Representative Margaret Christen will obtain information on post-secondary programs for people with developmental disabilities and the Committee will re-visit this topic at the August meeting.

As the Leadership and Advocacy Training grant projects are ending the Committee discussed future steps and took no action at this time. The Committee asked to review during the August meetings the Council’s current process for reviewing applications submitted in response to requests for proposals (RFPs) and how grantees are selected. Members may choose to propose amendments to Council Policies to involve more Council members in that process.

Public Policy Committee Report

Committee Chair Tisch reviewed Committee discussions including the process for developing the 2010 Biennial Disability Report. Webb reviewed the status of efforts to survey individuals on the waiting lists for Medicaid waiver programs.

Tisch and Webb reviewed discussions related to travel support for public members of certain state advisory committees. TCDD has historically provided financial support (approximately $20,000 per year) for travel expenses of self-advocates and family members who are not representing a state organization so that they are able to participate on advisory bodies of state agencies related to disability issues. On behalf of TCDD, Webb asked the Health and Human Service Commission (HHSC) to include in their Legislative Appropriations Request (LAR) the authority and funds to reimburse public members of these advisory bodies for their travel expenses. TCDD acknowledges that in consideration of the State’s budget reductions in the current and prospective fiscal years, HHSC may not be successful with such a request.

Executive Committee Report

Coleman-Beattie reported that the Executive Committee reviewed a request from Knowbility, Inc., to reconsider a decision to terminate grant funding for their employment project prior to the end of the grant period. This matter was reviewed by the Committee at the Committee’s April meeting. After considering the information provided by Knowbility, the Committee agreed to allow funding continue to the planned end-date of the project on August 31, 2010.

Members were provided with information about three stipends awards approved during the quarter, and for 16 continuation grant awards approved by the Executive Committee during the April and May meetings. Operations Director Martha Cantu briefly reviewed the TCDD Quarterly Financial Report. Coleman-Beattie indicated that the Executive Committee did not have any concerns after reviewing this information with staff. Coleman-Beattie also indicated that the Committee reviewed conflict of interest disclosure information from members and staff and had no concerns.

Webb noted that the Executive Committee approved a $500 contribution toward the Riot! Self-Advocate newsletter. He also reviewed plans for TCDD to work with Don Tebbe of TransitionGuides to develop emergency back-up plans for executive staff positions should an “un-planned” absence occur, and succession planning procedures for a planned departure of the Executive Director. Because of an existing contract from ADD for the NACDD Technical Assistance project, funding for this TCDD initial scope of services from TransitionGuides is available to TCDD at no cost. Staff and the Executive Committee will work with Tebbe and expect to have a proposed succession planning policy for consideration in August.

Announcements and Updates

Future meeting dates were discussed and members were asked to notify staff if the dates present conflicts.

Adjourn

Chair Coleman-Beattie adjourned the Council meeting at 11:26 AM.

Roger A. Webb, Secretary to the Council
Date

Attachments

Right to Privacy Position Statement

The Texas Council for Developmental Disabilities recognizes that people with disabilities have the same right to privacy as all people have in our nation. Confidentiality has historically been a cornerstone in providing services and medical care to people. The level of privacy protected under the Fourth Amendment of the U.S. Constitution is being challenged by the rapidly developing interactive technologies with a quickly emerging global information infrastructure.

In this age of the evolving information and communication technologies, the Council recognizes the positive role that the electronic media brings to the compilation and exchange of information. Our government agencies, businesses and non-profit agencies now have the advantage of quick exchange of information and the ability to gather and analyze massive amounts of information. This new capacity can help in streamlining business, reduce costs and ensure appropriate services for people. However, this new capacity for data collection can also be used intentionally or unintentionally to the detriment of the people the government agencies serve. The Council believes that the following basic principles should be applied to all information data collection systems.

  • Individuals, government entities, profit and nonprofit organizations have a shared responsibility for the secure use of personal information.
  • Prior to the collection and dissemination of personal and identifiable information, each individual should be advised of:
    • the specifics of personal information to be collected and/or released;
    • the entity which is collecting the information and the entity to which the information will be released;
    • the purpose for which the information is to be collected and/or released;
    • the individual’s legal rights to privacy and confidentiality of personal information;
    • the administrative procedures to follow to review personal information;
    • the process to remove, correct or add information that has been entered in a data collection system;
    • the avenues of recourse to recover damages in the case of improper use and/or disclosure of personal information; and
    • the degree of risk that personal information may be inadvertently collected by other entities through the electronic transmission processes.
  • Efforts should be made to ensure that personal information is not inadvertently shared, obtained, or collected by unauthorized parties through the process of electronic data transmission.
  • Directories of an individual’s personal information which may include personal identity; social security number; religious, political or organizational affiliations; employment; educational, medical, psychiatric, psychological, financial, and legal history; and family status should be used only as originally allowed by the individual.

Reviewed May 7, 2010

Service Coordination Position Statement

The Texas Council for Developmental Disabilities believes that the full inclusion and participation of people with disabilities in community life requires that individuals be aware of the services and supports available, that they have an array of service and support options from which to choose, and most importantly, that they have the central role in planning and directing their own future. These goals are most readily achieved when individuals and their families receive the benefit of service coordination.

Service coordination involves assisting individuals through planning, coordinating, locating, accessing and monitoring services and supports that will result in an optimal quality of life and level of community participation. Service coordination should be viewed as a distinct benefit available to people with disabilities who require access to various services and supports to participate fully and be fully included in their communities.

TCDD believes that the service coordination system should be independent from service delivery such that, the service coordinator is free from conflict of interest, and independent or separate from the direct delivery of other services received by the individual and/or family. Service coordinators who are employees of public or private agencies, family members, or individual contractors should be independent from conflict of interest. An independent service coordination structure also enables service coordinators to maintain the integrity of their advocacy role.

Service coordination must be available on an ongoing basis and support individual(s) rights to:

  • access or refuse specific services and supports, as desired;
  • develop their own service plan;
  • request alternate services and supports, providers or service coordinators; and
  • appeal decisions made about the services and supports they receive.

Access to service coordination should be available to all persons with disabilities who have functional needs for services and supports. Eligibility should not be based on specific diagnosis or financial status. Service coordination must be readily accessible and must have sufficient staff to provide assistance to individuals in a timely and responsive manner. Service coordination should be provided by one person who:

  • is committed;
  • is well trained;
  • is culturally competent;
  • serves a reasonable number of individuals; and
  • spends most of the time in support and coordination activities.

It is the responsibility of the service coordinator to:

  1. advocate on behalf of the individual;
  2. help the individual become empowered to act on his or her own behalf; and
  3. support the right of that individual to make decisions and to take risks based on informed choice and individual goals and values.

Service coordinators should:

  1. be knowledgeable about public and private resources;
  2. be creative in their ability to make public and private supports and services work to meet the individuals’ needs; and
  3. serve a facilitative role in bringing individuals, families and providers together. While service coordinators should be available to assist and consult with providers to ensure services are delivered, they also have a responsibility to monitor the quality of services and supports received.

Reviewed May 7, 2010

Guardianship Position Statement

The appointment of a guardian is a legal proceeding designed to protect individuals from abuse, neglect (including self-neglect) and exploitation and to provide for their care and the appropriate management of their property. Establishing a guardianship removes rights and privileges from the individual and assigns control to someone else. The Council believes guardianship should be granted only if all other alternatives are insufficient, and only to the extent and only for the length of time determined to be necessary, with annual reviews to determine if the guardianship can be terminated or reduced.

The Texas Probate Code requires that all guardianships be as limited as possible. The Council also believes that guardianship must be demonstrated to be the most appropriate and least restrictive alternative. When determined to be necessary, a guardianship should be tailored such that it is limited to only those specific areas in which surrogate decision making is likely to be needed. The individual’s ability to make decisions should be developed and supported to the maximum extent possible, and guardianship should not decrease an individual’s dignity or the right to make choices if there is no undue risk.

According to Texas Probate Code, Chapter XIII, a court may appoint a guardian with full authority over an “incapacitated person” or may grant a limited authority over an “incapacitated person” as indicated by the person’s actual physical or mental limitations and only as necessary to promote and protect the well-being of the person. Texas Probate Code further defines “incapacitated person” to mean (A) a minor; (B) an adult who, because of a physical or mental condition, is substantially unable to provide for their own food, clothing or shelter; to care for their own physical health; or to manage their financial affairs; or (C) a person who must have a guardian appointed to receive funds due the person from any government resource.

The Council believes that such limitations in abilities must be carefully evaluated, with a presumption that persons with disabilities are competent. Individuals may require assistance from others or accommodations based on their disability but still be able to make informed decisions based on their own preferences. Most importantly, the presence of a physical or mental disability or the age of an individual does not indicate the need for guardianship. The Council also believes that the evaluation of a person’s mental status must take into consideration and rule out any reversible conditions that can cause confusion and seeming incapacity before certifying the need for a guardian.

The vast majority of people with disabilities, including intellectual disabilities, do not need guardians. An in-depth capacity assessment must be conducted prior to any guardianship hearing, focusing on the person’s decision-making skills, experience, capacity and support system. The assessment should be conducted by a professional trained to administer and interpret an appropriate instrument related to need for guardianship. Additionally, there must be a mechanism for individuals to provide input during their own capacity assessment and guardianship reviews.

There are a number of alternatives to guardianship that should be explored before proceeding with a guardianship hearing. In the financial area, multi-party contracts, trusts, powers of attorney, representative payees, and money management programs may enable an individual to successfully manage financial issues without the necessity of having a guardian of the estate appointed. For health and programmatic concerns, the use of advance directives or surrogate decision-makers (under the Health and Safety Code) might prevent the need to establish a guardian of the person. Consideration should be given to providing education and support to develop decision-making skills and opportunities for additional experience.

If the alternatives are not sufficient to protect the interests of the individual, a guardianship hearing may be necessary. It is important that a judge carefully evaluates the qualifications and interests of a proposed guardian and gives special consideration to the nature of the relationship. It is also essential that an appointed attorney ad litem adequately represent the interests of the person for whom guardianship is being proposed, and that all attorneys ad litem appointed by judges in guardianship proceedings have been certified in guardianship law by the State Bar of Texas as required by the Texas Probate Code. Further, a professional evaluation of the individual by a physician or psychologist must clearly indicate how the individual’s disability affects his or her ability to make and communicate informed decisions.

The Council believes that if a guardianship of the person is granted, it should be of the limited type in which the specific areas of needed assistance are listed in the order by the judge. The guardianship should encourage the development of maximum self-reliance and independence for the individual. Further, the required annual review of the guardianship must involve a serious consideration of whether it needs to be continued, modified, or terminated, and a yearly report of this review must be filed in each guardianship. It is essential that annual reviews are not limited to a financial review, but also consider the individual’s capacity and needs. Additionally, the judicial system must have the resources needed to make and review guardianship assessments. The Council further recommends that participants in the annual review should include, but not be limited to, the individual, the guardian, attorney ad litem, and an outside advocate/ombudsman.

It is estimated that many of the Texans with disabilities who do not have the capacity to provide informed consent for services, treatments, or legal issues have no one to provide assistance in decision-making or even to serve as a guardian. Financial barriers (bonds and court costs) often prevent family members from serving in this role. The Council believes that the state of Texas should remove these barriers. Local guardianship and money management programs (supported in part by the Health and Human Services Commission) plus surrogate consent committees (for ICF-MR residents only) fill part of this gap, as do services provided by the Texas Department of Family and Protective Services. However, more resources are sorely needed in this area. Additionally, the Council believes that the state needs to establish statutory authority to regulate private professional guardians more closely.

Reviewed May 7, 2010

Emergency Preparedness Position Statement

People with disabilities deserve respectful, prompt, and efficient assistance during evacuation and relocation resulting from a natural disaster or emergency event. Individuals must have access to appropriate and accessible transportation, shelter, medical and mental health care, and information on temporary support services. The Texas Council for Developmental Disabilities believes that to achieve this, people with disabilities and their families, state agencies, first responders, relief workers, and local and state government must work together to create emergency preparedness systems and plans that are responsive to people with disabilities’ needs and stated preferences. There also must be a priority on people with disabilities and their families creating individual emergency preparedness plans.

The Texas Council for Developmental Disabilities also believes that people with disabilities and their families must be involved in planning and implementing first responder and relief worker trainings that address the needs of people with disabilities in an emergency event, including accessible transportation, adherence to an individual’s existing emergency preparedness plan, and the importance of keeping families and other support networks, including service animals, together throughout the evacuation and relocation processes.

The Texas Council for Developmental Disabilities believes that the following principles are integral to the health and safety of people with developmental disabilities during an emergency event:

  • Individuals and families create, review and revise as necessary (at least annually) individual emergency preparedness plans, with support from long-term care and support programs when appropriate;
  • Confidentiality of personal and medical information included in an individual’s emergency preparedness plan or provided to any voluntary registry system;
  • Participation of people with disabilities and families in developing local, regional, and state emergency preparedness plans that are responsive to the needs and preferences of people with disabilities;
  • Participation of people with disabilities and their families in developing trainings for first responders and relief workers on the needs of people with all disabilities during and after an emergency event, including information on invisible disabilities, self-determination, and preserving support networks; and
  • Information on emergency preparedness and preparedness planning activities and resources must be available.

Reviewed May 7, 2010