IR12 — Legal Rights Of Residents Of Intermediate Care Facilities For Persons With Mental Retardation Or Related Conditions (ICFS-MR/RC)

March, 1995

All residents of Intermediate Care Facilities for the Mentally Retarded and Persons with Related Conditions (ICFs-MR) have certain rights (1). Level I, Level V, and Level VI ICFs-MR serve persons with mental retardation; Level VIII is a level of care for persons with related conditions (2) who do not have mental retardation.

All residents of ICFs-MR have the following rights:

  1. To be informed by the facility of her (3) rights and of the rules of the facility;
  2. To receive a copy of the facility's written policies and procedures for the management of conduct between staff and clients, including facility rules;
  3. To be informed by the facility of her medical condition, developmental and behavioral status, any risks of treatment, and of the right to refuse treatment;
  4. To have an individual program plan developed by an interdisciplinary team and to be given the opportunity to participate in interdisciplinary team meetings to develop the individual program plan, unless participation is unobtainable or inappropriate;
  5. To be transferred or discharged only for good cause and only after being provided a reasonable time to prepare for the transfer or discharge (except in emergencies);
  6. To be allowed and encouraged to exercise her rights as a client of the facility and as a citizen of the United States, including the right to file complaints and the right to due process;
  7. To be allowed to manage her financial affairs and be taught to do so to the extent of her capabilities;
  8. To have a full and complete accounting of her personal funds if entrusted to the facility, and to have access to her financial record upon request;
  9. To be free from physical, verbal, sexual, or psychological abuse or punishment;
  10. To be free from unnecessary drugs and physical restraints, and to be provided active treatment to reduce dependency on drugs and physical restraints;
  11. To receive a continuous active treatment program, which includes aggressive, consistent implementation of a program of training, treatment, health and other related services, to maximize independence and self-determination and prevent regression;
  12. To be ensured confidential treatment of all information contained in her records, regardless of the form or storage method of the records. The facility must have policies and procedures in effect that govern the release of client information;
  13. To be provided with the opportunity for personal privacy and ensured privacy during treatment and care of personal needs;
  14. To not be required to perform services for the facility and, if she does work for the facility, to be paid for her work at prevailing wages and commensurate with her abilities;
  15. The opportunity to communicate, associate and meet privately with persons of her choice, and to send and receive unopened mail;
  16. To have access to telephones with privacy for incoming and outgoing calls except as contraindicated by factors identified within her individual program plan;
  17. The opportunity to participate in social, religious, and community group activities;
  18. To spend a major portion of each waking day out of bed and outside the bedroom area moving about by various methods and devices whenever possible, if the client has multiple disabling conditions;
  19. To receive training in personal skills essential for privacy and independence (including, but not limited to, toilet training, personal hygiene, self-feeding, bathing, dressing and communication of basic needs) until it has been demonstrated that the client is developmentally incapable of acquiring them;
  20. To retain and use appropriate personal clothing and possessions, and to be dressed in her own clothing each day; and
  21. If married, to be ensured privacy for visits by her spouse; if both reside in the facility, to be permitted to share a room.

These rights are published at Volume 42, Code of Federal Regulations, Part 483. Many of the requirements that an ICF-MR provide quality individualized services, a safe environment, and humane care and treatment are also spelled out in these federal regulations. For residents whose primary language is NOT English, efforts should be made to provide written or oral information and services in their native language. This handout lists only some of the basic civil rights guaranteed to the residents by these federal regulations. Residents of ICFs-MR in Texas also have the rights guaranteed to all citizens by the state and federal constitution and laws, including the Texas Persons with Mental Retardation Act.

If you believe that any of these rights are being violated, report the violation to:

Texas Department of Human Services
Long Term Care Regulatory Section
P. O. 149030 - Mail Code Y-976
Austin, Texas 78714-9030
1-800-458-9858

If you are complaining of abuse or neglect of an ICF-MR resident, make your report to:

Texas Department of Protective & Regulatory Services
P. O. Box 149030 - Mail Code E-206
Austin, Texas 78714-9030
1-800-252-5400

Both offices prefer to receive complaints by telephone.

Special Provisions For Obtaining Consent From Residents Of ICFs-MR

In 1993, the Texas Legislature passed a special law that allows for surrogate decision-makers for some residents of Intermediate Care Facilities for the Mentally Retarded (ICFs-MR). If a resident of a community-based ICF-MR lacks the capacity to make a major medical or dental treatment decision, and is an adult who has no guardian or is under age 18 and has no parent, guardian, or managing or possessory conservator, an adult surrogate may consent on behalf of the resident. The surrogate decision-maker must have decision-making capacity and be willing to consent on behalf of the client. Consent given by the surrogate is valid and competent to the same extent as if it were given by the person with a disability herself. The surrogate must be chosen from the following list, in order of descending preference:

  1. an actively involved spouse;
  2. an actively involved adult child who has the waiver and consent of all other actively involved adult children of the client to act as the sole decision-maker;
  3. an actively involved parent or stepparent;
  4. an actively involved adult sibling who has the waiver and consent of all other actively involved adult siblings of the client to act as the sole decision-maker;
  5. any other actively involved adult relative who has the waiver and consent of all other actively involved adult relatives of the client to act as the sole-decision-maker.

Surrogate decision-makers may not consent to experimental research, abortion, sterilization, electroconvulsive treatment, or management of client finances. If no guardian or surrogate decision-maker is available, the Texas Department of Mental Health and Mental Retardation (TDMHMR) must establish and maintain a list of individuals qualified to serve on a surrogate consent committee, to consist of three (3) to five (5) members. This committee (like the surrogate) may consent to major medical or dental treatment, psychoactive medication, or a highly restrictive procedure. Consent is based upon consensus of the committee members. Detailed requirements govern how the committee is established and how the committee functions. The committee's decision may be appealed to court.

Endnotes

(1) This includes residents of state schools for persons with mental retardation, private ICFS-MR, and ICFs-MR run by non-profit or public organizations.

(2) Related conditions is the term used for developmental disabilities such as cerebral palsy, spina bifida, muscular dystrophy, head injury before age 22, autism, etc.

(3) Advocacy, Inc. alternates male and female pronoun usage in its handouts. In this handout, the female pronoun is used.

Advocacy, Incorporated's goal is to make each handout understandable by and useful to the general public. If you have suggestions on how this handout can be improved, please contact Advocacy, Inc. at the address and telephone number shown on Advocacy's home page or e-mail Advocacy, Inc. at infoai@advocacyinc.org. Thank you for your assistance. This handout is available in Braille and/or on audio tape upon request. Advocacy, Inc. strives to update its materials on an annual basis, and this handout is based upon the law at the time it was written. The law changes frequently and is subject to various interpretations by different courts. Future changes in the law may make some information in this handout inaccurate. The handout is not intended to and does not replace an attorney's advice or assistance based on your particular situation.