Position Statements
of the
6201 E. Oltorf, Suite 600, Austin, Texas 78741-7509 (512) 437-5432 or 1-800-262-0334 TDD (512) 437-5431 Fax (512) 437-5434 http://www.txddc.state.tx.us TCDD@tcdd.state.tx.us
Position Statements
Table of Contents
I. II. III. IV. V. VI. Access to Health Care Aging with Developmental Disabilities Children and Families Community Living Criminal Competency Education
VII. Emergency Preparedness VIII. Employment IX. X. XI. Family Support Services Guardianship Public Transportation Systems
XII. Right to Privacy XIII. Service Coordination XIV. Transition from School to Adult Life
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Access to Health Care
Position Statement
The Council believes that full access to health care must be based on the following critical principles:
Non-Discrimination - All people, regardless of their disability, age, ethnic background, or ability to pay, must be able to fully participate in all health care systems generally available to citizens of Texas. They must have access to health care which:
complies with the Health Insurance Portability and Accountability Act; prohibits rating practices that discriminate against higher users of health care; ensures that all persons, regardless of income or health status, have access to needed health-related services; ensures continuity and portability of coverage to and from group, individual and government plans; and ensures an appeals process when disagreements exist.
Comprehensiveness - All people, regardless of their disability, age of onset, or age, must have access to affordable and available health care programs that ensure a comprehensive array of health, rehabilitation, personal, and support services across all service categories and sites of service delivery. To be comprehensive, these services should be provided in the context of a medical home, where the clinician works in partnership with the individual and/or family to ensure that all of the medical and nonmedical needs of the patient are met. A medical home is defined as primary care that is comprehensive, accessible, continuous, consumer-centered, coordinated, compassionate, and culturally effective. Through this partnership, the clinician helps the individual and/or family coordinate and access specialty care, educational services, out-of-home care, family supports, and other public and private community services that are important to the overall health of the individual and/or family. In addition to the traditional acute care hospital and physician services, comprehensive health-related services include, but are not limited to the following:
wellness and preventive services, including services to prevent secondary conditions or a loss of functional ability; health promotion/education services; diagnostic services; long and short term home and community-based services; prescription drugs, biologicals and medical foods; mental health and counseling services; rehabilitation services and specialty care, including audiology, occupational therapy, physical therapy, respiratory therapy, speech-language pathology services, cognitive therapy, vision care, behavioral therapies, and therapeutic recreation; personal assistance services and independent living services; and durable medical equipment and other assistive technology devices, equipment and related services.
(Continued)
Choice - All people, regardless of their disability or age, must be assured that comprehensive health,
rehabilitation, personal and support services are provided on the basis of individual need, preference and choice which: ensure a level of consumer choice in relation to services and providers; ensure a range of service settings through an integrated delivery system; ensure an appropriate amount, scope and duration of services; and ensure the availability of trained personnel.
Equity - All people, regardless of their disability or age, must be ensured equitable participation in all available health care systems and not be burdened with disproportionate costs. An equitable system:
limits out-of-pocket expenses and cost sharing requirements for participants to a reasonable nondiscriminatory level; provides access to services based on health care need, not income level or employment status; ensures adequate reimbursement for service; and ensures equity in coverage between mental health and physical health benefits.
Efficiency - All people, regardless of their disability or age, must have access to a comprehensive health care system - including wellness, prevention and treatment services - that provides appropriate, effective, quality services and which minimizes administrative waste. An efficient system:
reduces administrative complexity and minimizes administrative costs; allocates resources in a more balanced way between preventive services, acute care, rehabilitation and chronic care management; and maintains effective cost controls so that all people can get the health care services which they need. Reviewed November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Aging with Developmental Disabilities
Position Statement
The number of older adults is rapidly increasing overall and becoming a larger percentage of the general population. Included in this aging population are people with disabilities. While exact figures are not known, it is estimated that about 526,000 Americans age 60 and older have developmental disabilities such as cerebral palsy, mobility impairments, traumatic brain injuries, spinal cord injuries, mental illness and mental retardation. National census data show, that in the next 30 years, this number is projected to double. While the aging process brings significant changes to all individuals and their families, these changes are often intensified by the presence of a developmental disability. Many people with developmental disabilities continue to rely on their families for care throughout their adult life. The care is often provided by aging parents, spouses, and other family members, and the quality of this care often becomes compromised by the caregivers’ own aging process. Individuals with disabilities and their families each face challenges and transitions caused by the aging process. The Texas Council for Developmental Disabilities believes that older adults with disabilities should have: the same opportunities as other older citizens to live, work, enjoy leisure time and retire in the community of their choice with the services and supports they need; the same rights and dignity as other older people; and assistance in establishing a comprehensive retirement plan to encompass any or all of the following concerns: – access to health care – advanced directives relating to health care – counseling services – financial issues – guardianship – housing – legal issues – leisure time activities – long-term care plan – retirement or employment options – self advocacy training – transportation
Therefore the Council believes that Texas has a responsibility to ensure that the state’s service delivery systems develop the capacity to meet the projected needs of older Texans with disabilities. To meet these challenges, the Texas Council for Developmental Disabilities calls for: the current service delivery systems to increase their capacity to provide for a larger number of older Texans with disabilities who will be needing assistance to maintain a high quality of life; and coordinating and integrating to the maximum extent possible the delivery systems that traditionally provide services to the aging population and the delivery systems that traditionally provide services to people with developmental disabilities. In so doing, older individuals with developmental disabilities will be better served and more fully included in their communities. Reviewed August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Children and Families
Position Statement
All children belong in families that provide love, caring, nurturing, bonding and a sense of belonging and permanence that best enables them to grow, develop and thrive. Children with disabilities are no different from other children in their need for the unique benefits that come only from growing up in a permanent family relationship. All children benefit and are enriched by being part of an inclusive environment that promotes physical, social, and intellectual well-being and leads to independence and self-determination. Families of children with disabilities often need supports and services to sustain family life and keep their child at home and included in the community. Family support services are intended to strengthen the family’s role as primary caregiver, prevent expensive out-of-home placement of individuals with disabilities, maintain family unity, and foster self-determination. The Texas Council for Developmental Disabilities believes that: All children can and should live in a family. All children need a family to best grow, develop and thrive. All children deserve the love, nurturing and permanency that are unique to family life. Families come from many cultures and are multidimensional. No matter its composition or cultural background, a family offers a child a home and a lifelong commitment to love, belonging and permanency. Parents with disabilities are capable of and do provide loving families and homes to children. Families, including parents with disabilities, should have available the level of supports and services needed to keep children with disabilities in their own homes. Family support services should include, but are not limited to, respite care, provision of rehabilitation and assistive technologies, personal assistant services, parent training and counseling, vehicular and home modifications, and assistance with extraordinary expenses associated with disabilities. In addition, since the vast majority (over 85%) of individuals with disabilities reside with families in their own households, families of children with disabilities need access to appropriate child care and to before- and after-school programs. Child care for children with disabilities should be affordable, safe, appropriate and in the most integrated setting. Providers of family support services must have education and training that will prepare them to work with people with disabilities in inclusive settings to achieve this goal. To be effective and beneficial, supports and services must be easy to access, family-driven, individualized, flexible to changing needs and circumstances, culturally sensitive and based on functional needs rather than categorical labels.
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When children cannot remain in their own families, for whatever reason, they still deserve to live and grow up in a family. The first priority should be to reunite the family through the infusion of services and supports. When that is not possible and the family can remain actively involved in the child’s life, the natural family should be a key participant in selecting an alternate family situation for their child, including foster families, co-parenting and adoption. When families are not actively involved in their child’s life, permanency planning must occur to allow the child to live in a family. School districts are an integral source of information and training for parents. Coordination among school districts and outside agencies is critical to provide parents with accurate, timely information regarding services and eligibility requirements. The state Child and Protective Services system is essential to guarantee that all children are safe from abuse and neglect. Support of the families of children with disabilities from this system is critical to make sure children remain in a safe, family environment and are not unnecessarily removed from families due to the absence of necessary services and supports. The Council also believes that when children with disabilities grow up in families, the community at large accepts the value of providing supports to children and families at home so that children become and remain participants and contributors to their communities. The Council believes that the state of Texas should adopt a public policy statement recognizing the value of families in children’s lives and develop programs, policies and funding mechanisms that allow all children to live and grow up in a family. Reviewed August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Community Living
Position Statement
The Texas Council for Developmental Disabilities believes that individuals with disabilities should have access to opportunities and the supports needed to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, the state, and the nation. Individuals with disabilities must have access to the full range of accommodations necessary to ensure that living in their natural community is possible. These accommodations may take various forms such as personal attendant services, respite, durable medical equipment and minor home modifications. Accommodations may be sustained for either longer or shorter duration or may be of greater or lesser intensity depending on the need of the individual. Examples of accommodations include physical accessibility, attendant services, medication monitoring, supported living, assistive technology and employment services. Services to children should be provided in their natural family setting. When children cannot remain with their natural family, they must have access to family-based alternatives. Adults with disabilities shall exercise choice and control about where, how, and with whom they live. They must be provided with assistance that may be needed to make these choices and to sustain choices regarding community living. Adults should have access to the services and supports they need to live in the community. The state of Texas must allocate the requisite resources to support community living for people with disabilities. In addition, the state must rapidly expand the availability of individualized community options, transition all individuals in state institutions to community living, commit to a transition plan to close state schools and transfer any cost savings to quality community programs. Communities must also be cultivated to ensure local systems foster accessibility within and across all facets of community life, so that maintaining community placement is a feasible outcome for individuals with disabilities. Reviewed November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Criminal Competency
Position Statement
People with disabilities experience greater problems with criminal courts than society at large for a variety of reasons including general discrimination, lack of knowledge and training about disabilities, and inadequate supports and representation in criminal justice proceedings. A particular problem is invalid and inconsistent assessments for legal competency and sanity. Current assessment procedures do not fully address the needs of this population. The Texas Council for Developmental Disabilities believes that the following fundamental principles apply to people with disabilities who undergo competency evaluations. People with cognitive and psychiatric disabilities share with all people the rights to equal protection and due process under the law. People with disabilities are also afforded certain protections, rights and benefits under the Americans with Disabilities Act (Title II), and these protections, rights and benefits extend to involvement with the criminal justice system. People with disabilities, as all people, have rights, protections and benefits and responsibilities. When their rights are fairly and equally protected, people with disabilities must accept responsibility for criminal activity. A diagnosis of mental retardation or mental illness does not automatically mean a person is incompetent to stand trial. However, the presence of mental retardation raises so many possibilities of miscommunication, misperceptions and an inadequate defense, that people with mental retardation found competent to stand trial must not be subject to the death penalty. Further, the determination of mental retardation must be made by the court in a proceeding that occurs prior to the onset of a trial. The Council believes that criminal assessment procedures must fully address the needs of people with disabilities and include the following components:
Early Intervention
Must include valid improved screening during arrest, booking or incarceration, and assessment of disability, and comprehensive training of arresting and booking individuals.
(Continued)
Recognition
Must include ongoing training of criminal justice professionals that is based on research and proven effective practices. This would include recognizing the possible existence of a developmental disability, skill in communicating with people with disabilities, and understanding of stereotypes and stigma about disabilities unrelated to criminal activity. They must also seek expert consultation for competency evaluations. Expert consultants must have specialized training and experience in forensic evaluation, which would include legal competency for adults and fitness to proceed for juveniles.
Due Process
Must include reliable, age-specific and culturally competent assessments of and standards for: Determining the existence of cognitive and psychiatric disabilities -- example formats include the uniform mental health assessment and the diagnostic eligibility for mental retardation and related conditions formats; and Determining legal competency for adults and fitness to proceed for juveniles -- example instruments include the CAST-MR (Competency Assessment for Standing Trial for Defendants with MR) and the MacCAT-CA (MacArthur Competence Assessment Tool – Criminal Adjudication). These assessments should describe any relevant negative impact on the results because of the individual’s cultural background, primary language, communication style, physical or sensory impairments, motivation, attentiveness, or emotional factors.
Reasonable Accommodations
Must include, at all stages of criminal justice proceedings, accommodations to assist in understanding and participating in one’s own defense, with physical and cognitive accommodations and assistance in decision making if needed. The Council recognizes that prevention, early intervention, due process and reasonable accommodations are interwoven and overlapping components of a comprehensive system and that all must be available at all stages of an individual’s involvement with the criminal justice system. Reviewed August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Education
Position Statement
All people with disabilities in Texas should have the opportunity to achieve their maximum potential for independence, productivity and integration into the community. Education is a lifelong learning process which is vital to attaining a full and complete life. The postsecondary results of an appropriate public school education for students with disabilities should be evidenced by employment, enrollment in postsecondary school, or both within one year of leaving high school. The Texas Council for Developmental Disabilities believes that all students regardless of individual needs must be provided with individualized appropriate instruction, research-based positive behavioral interventions and supports, access to the general curriculum, and related services in the least restrictive environment. Related services include but are not limited to adaptive, assistive technology; modifications; and supplementary aides. Related services must be designed to ensure students with disabilities receive a free and appropriate public education in the least restrictive environment. The delivery of individually appropriate instruction and related services must be provided by qualified teachers and service providers with administrative support and opportunities for continued/ongoing professional development in all areas of identified need. It is the position of the Council, as well as the policy of the state, that all children should be treated with dignity and respect when addressing behavioral and disciplinary needs of students. The Council believes that students who may access publicly funded education through charter schools or schools accepting voucher payments must be accorded the same education as noted above. The Council believes that schools that accept state money to educate students must accept any student with a developmental disability who may apply for admission to that school, abide by federal and state education laws that protect the rights of students with disabilities, abide by Section 504 of the Rehabilitation Act that requires any entity receiving federal funds to include people with disabilities in its program, and accept any student at the state rate of payment asking for no additional tuition or fees beyond the normal fees required by the student’s independent school district. If these criteria are not met, then the Council adamantly opposes publicly funded school vouchers and charter schools. The Council is opposed to any initiative that would deplete funds from the public education system and ultimately from funds available for the education of students with disabilities. The Council believes that full inclusion should be approached as a value and underlying philosophy by which we educate all students. We believe that successful inclusion requires that teacher education programs prepare all educators and administrators to work with the full range of students in inclusive settings. Special education is not a separate educational system, but rather a service provided to people with specific needs within the general educational system. Professional preparation programs should emphasize the shared responsibility of all educators and administrators for all students.
(Continued)
The Council believes that full inclusion requires the ongoing, shared responsibility of students, parents, guardians, educators, administrators and the community at large. It is therefore the position of the Texas Council for Developmental Disabilities that all students have a right to learn, play and work with students their own age, with and without disabilities, in the same schools, classrooms and other educational programs attended by their brothers, sisters and neighbors, and that schools, classrooms and programs must be both physically and programmatically accessible to all students. Reviewed November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
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 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.
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Approved February 2, 2007
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Employment
Position Statement
The Texas Council for Developmental Disabilities believes that people with disabilities have the right to job training, employment at competitive wages, and career growth as lifelong learners. The Council further believes that employment opportunities should be open to people with disabilities in the community job market without discrimination or segregation. Through employment, people with disabilities gain an important point of entry into their community, a sense of being valued, wages and job benefits. With these tangible and intangible rewards from employment, people with disabilities secure greater independence and freedom from public support service systems. The Texas Council for Developmental Disabilities affirms that: Students with disabilities should receive a sound foundation in their public school education from which to transition to a career path after graduation. This foundation must include futures planning. Secondary education must provide a range of choices in career preparation such as vocational skills, career and technology education, preparation for post secondary education and opportunities for employment in the community. People with disabilities have the right to self determination and choice in establishing their career path, career goals, job placement or self-employment options, retention, advancement, and retirement plans. People with disabilities should have access to an array of individualized, flexible and coordinated support services including assistive technology and natural supports, as long as necessary to obtain and keep employment. The employment needs of people with disabilities should be effectively addressed by a collaborative effort between businesses, professional organizations, and state and local governments. All entities involved in statewide employment initiatives should disseminate information about civil rights laws that protect people with disabilities, about resources to support people with disabilities in the workplace, and about the tangible benefits that accompany employment of people with disabilities in the workforce. Entities involved in statewide employment initiatives should assist people with disabilities to develop successful self-employment options that can include micro-enterprises and other entrepreneurial ventures. Reviewed November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Family Support Services
Position Statement
National caregiver studies estimate that more than 85 percent of individuals with developmental disabilities reside with and rely on their families for care. Families that care for individuals with disabilities range from young parents learning to care for children with physical and mental disabilities, to parents caring for teenagers and young adults with disabilities, to frail and elderly parents of aging, dependent adults with disabilities. Emotional, social and economic challenges accompany a family’s commitment to their family member with a developmental disability. To provide sustained care for a child, a sibling, or an adult with disabilities, families need access to supports and services. Services to families with a family member with disabilities have a dual focus. Those services support the health and integrity of family units, and they maximize the strengths and potential of individuals with disabilities to independently participate in and be included in their communities. During childhood, family support services are intended to strengthen the family’s role as primary caregiver and prevent institutional placement of individuals with disabilities. Throughout an individual’s life span, family support services are intended to strengthen and maintain family connections while fostering selfdetermination, independence, and participation in school, job, recreational and community settings. Adequate support services must be available to people with disabilities so that they can remain in the community rather than face inappropriate institutional placements. The Texas Council for Developmental Disabilities supports the provision of a full array of flexible family support services that include but are not limited to: adaptive equipment and specialized clothing; assistive technology devices and services; counseling services; financial assistance with the extra expenses of providing support; home modifications; leisure-time planning; person-centered comprehensive planning for transition from early childhood to school, from school to adult life, and from adult life to retirement; personal assistance services/direct care services; respite care that is affordable, safe, age-appropriate and in the most integrated setting; service coordination including information and referral services; training to empower people with disabilities and their families to advocate for lifestyles they choose; transportation; and vehicular modifications.
(Continued)
Providers of family support services must have education and training that will prepare them to work with families and people with disabilities of all ages in inclusive settings to maximize each individual’s potential and inclusion with their peer groups. To be effective and beneficial, family supports and services must be easy to access, designed by the individual and their family, individualized based on functional needs, flexible to changing needs and circumstances, and culturally sensitive. Reviewed November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
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 wellbeing 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.
(Continued)
The vast majority of people with disabilities, including mental retardation, do not need guardians. An indepth 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 (for mental retardation) 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 November 3, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Public Transportation Systems
Position Statement
Within our society, freedom of movement is a fundamental right, however, it remains a largely unfulfilled promise for citizens with disabilities. Transportation is essential to any effort to enable all citizens to live as independently as they choose, to engage in productive self-sustaining activity, to participate in all facets of community life, and to be fully integrated in their communities. A transportation system should be a seamlessly connected network with a pedestrian infrastructure linked to all modes of public transportation including taxi services, bus, light rail, trains and airplanes as well as cars and bicycles. A public transportation system must meet the needs of citizens in an accessible and affordable manner. The Texas Council for Developmental Disabilities believes that all publicly funded and/or regulated transportation service systems must be: seamlessly coordinated among all modes of transportation; expanded in suburban, urban, rural and unincorporated areas to connect places people live with places they work, shop, socialize, worship, attend school, access health care, etc.; and be fully accessible to all people with disabilities. The Council will continue to work collaboratively with partners such as agencies representing seniors and low income families, who share transportation concerns, to continue to seek solutions now and in the future. Reviewed August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
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 must 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 must 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.
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Efforts must 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 must be used only as originally allowed by the individual. Reviewed August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
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 must: (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 August 5, 2006
(512) 437-5432 / 1-800-262-0334 TDD (512) 437-5431 / Fax (512) 437-5434 6201 E. Oltorf, Suite 600, Austin, TX 78741-7509 TCDD@tcdd.state.tx.us / http://www.txddc.state.tx.us
Transition from School to Adult Life
Position Statement
The Texas Council for Developmental Disabilities believes that people with disabilities have the right to live in and be an integral part of their communities, to be employed, to be independent, and to make informed choices about their lives. Each student with disabilities, as all youth, must be given opportunities to achieve academic success, to cultivate personal interests and preferences, to explore and pursue career options that are both relevant and meaningful, and to participate in job training, job placement and community experiences as part of the transition from school to adult life. This can include attending higher education or technical schools. A comprehensive array of timely services, coordinated among and between all adult service agencies, is imperative to maximize choices and opportunities for students with disabilities to achieve independence and be contributing and respected members of their communities. The transition planning process should be a deliberatively thoughtful, student-centered, student-led process that takes into account the individual’s unique values, preferences, abilities, and challenges. In addition, it should include training in self-determination, self-advocacy and individual rights. Whole communities, including families, schools, businesses, employers, public service agencies, and other stakeholders must work together to identify, locate, and share resources to assist in promoting successful post-school outcomes. Students and families should be trained to actively and effectively participate in transition planning. Students should have the opportunity to identify and self-select the participants in their transition planning processes. Successful transition planning is facilitated when each student and his or her parents have the information, knowledge, and skills that will enable them to fully participate in the process that plans the student’s future. That information, knowledge and skills should be coordinated by a single point of access at each independent school district. The Council values the diversity and unique contributions of each citizen of the state. The current fragmentation of the various service delivery systems often results in the provision of inadequate, untimely, and/or inappropriate services and costly duplicative efforts. Coordination among school districts and outside agencies on information sharing, flexible scheduling, and implementation timelines is critical to the success of transition planning. It is the Council’s position that providing effective transition planning and services benefits each community and the entire state. People with disabilities who are employed enrich the diversity of our communities, rely less on publicly-funded services, and contribute to the overall well being of the community’s economic base. Reviewed August 5, 2006