Public Comments — 40 TAC 105 Proposed Rules Changes to DARS Autism Program

TCDD Letterhead

Via Email: DARSrules@dars.state.tx.us

September 21, 2015

Department of Assistive and Rehabilitative Services
4800 North Lamar Boulevard
Austin, TX 78756

RE: Public Comments on Proposed Changes to Rules in the August 21, 2015, Texas Register
Texas Administrative Code, Title 40, Part 2, Chapter 105, governing Autism Program

Thank you for the opportunity to provide comments on changes to 40 TAC 105 proposed in the August 21, 2015, issue of the Texas Register (40 TexReg 5280-5289). The Texas Council for Developmental Disabilities (TCDD) is established by federal law in the Developmental Disabilities Assistance and Bill of Rights Act and is governed by a 27 member board, appointed by the Governor, 60 percent of whom are individuals with developmental disabilities or family members of individuals with disabilities. TCDD’s purpose in law is to encourage policy change so that people with disabilities have opportunities to be fully included in their communities and exercise control over their own lives.

The context for these comments is that, unlike most programs provided through the Department of Assistive and Rehabilitative Services (DARS) and other Texas health and human services programs serving persons with disabilities, the DARS Autism Program is not subject to federal regulation or oversight. Comments on the current proposal take into account unresolved issues raised in public comment on the rules that were adopted one year ago and now in effect, action taken by the 84th Texas Legislature, as well as the reorganization of health and human services agencies.

SUBCHAPTER A. GENERAL RULES

§105.101.Purpose.

The section references “other treatment approaches” but the subsequent sections deal exclusively with applied behavior analysis (ABA). We recommend that the rule define “other treatment approaches” and include them throughout the subchapter or delete the term.

§105.105.Definitions.

(3)Applied behavior analysis (ABA)

Some ABA practitioners use aversive interventions. The definition needs to clearly state that for purposes of the state-funded DARS autism program, ABA relies on positive behavioral interventions and supports and does not include aversive interventions.

This comment was submitted previously by another commenter on the definition of ABA in the rules that are now in effect. The response was that DARS would not prohibit aversive interventions. No explanation was provided (39 TexReg 6681, August 22, 2014).

It is recommended that the DARS Autism Program articulate, explain, and publish for public comment its policy with respect to the use of aversive interventions on children ages 3-15. This potential element of ABA affects the private rights of children with disabilities and their parents (Texas Government Code, §2001.003). Furthermore, a policy that allows aversive interventions or is silent with respect to their use may enable the abridgement of the child’s rights under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 and the Health and Safety Code, Chapter 592.

(28)Treatment plan

The definition has been amended to include “and other” treatment services. Please define these services. The rules currently address only the role of individuals providing ABA. If other services are to be provided, a requirement of collaboration with providers of those services needs to be made here. Otherwise please delete reference to other services.

SUBCHAPTER B. DARS COMPREHENSIVE ABA SERVICES

§105.211.Services Provided.

(6)administer the DARS-designed post-test protocols within 30 calendar days of the child’s exit from the DARS Autism Program;

The language here, “within 30 calendar days of,” needs to be changed to be consistent with §105.213(f), “no more than 30 days before to make clear the post-test does not occur within 30 days following exit.

Please add a paragraph referencing coordination with providers of “other services” if services other than ABA are to be provided.

The previous proposal of this section included language prohibiting the use of procedures that cause pain or discomfort. A commenter requested that DARS clarify procedures that would not be considered “restrictive” and that a process be put in place for DARS’ approval of such procedures on a case-by-case basis. The commenter also requested that DARS establish a peer review committee to review restrictive procedures.

DARS’ response was to remove the phrase “physically aversive interventions that would result in pain or discomfort are not permitted” from three sections of the proposed rules (§§105.211, 105.311, and 105.409). DARS did not explain this response. It is recommended that consistent with the policies of other health and human service agencies in Texas, and in keeping with both federal and state laws governing rights of disabled persons, DARS should prohibit the use of procedures that cause pain or discomfort. If such procedures are to be permitted, they need to be understood as exceptional and clinically justified and DARS should be involved in and responsible for approving their use, with or without the advice of a peer review committee.

SUBCHAPTER C. DARS FOCUSED ABA SERVICES

§105.309.Enrollment.

(a)(1)The contractor must enroll eligible children in DARS Focused ABA services in accordance with provisions of the contract established between the contractor and DARS;

If any of the provisions of the contract between the contractor and DARS affect the private rights or procedures of nongovernmental parties, e.g., child, parent(s), other providers, please include those elements in the subchapter for public review and comment (Texas Government Code, §2001.003(6)).

SUBCHAPTER E. RIGHTS OF PARTICIPANTS

§105.507.Rights of Children and Families.

(b)The contractor is required to provide the families written notification of their rights during the enrollment process.

For clarity, please amend the sentence to read “During the enrollment process, the contractor is required to provide written notification of the rights of the child and the parent(s).”

“Family rights” are not recognized statutorily. Rights of persons with disabilities confer to the child, not the family. This limits, but does not preclude, extended family involvement.

The only rights listed in this subchapter relate to confidentiality of records, accessibility of records, and filing a complaint. These are important rights but other rights should also be mentioned.

Other rights that should be mentioned include:

  • Constitutional and other rights afforded to all individuals under federal or state law
  • Rights under the Developmental Disabilities Assistance and Bill of Rights Act of 2000, relating to
    • appropriate treatment, services, and habilitation for such disabilities
    • treatment, services, and habilitation designed to maximize the potential of the individual and provided in the least restrictive setting
    • care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights
    • care that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population
    • prohibition of the use of physical restraint and seclusion unless absolutely necessary to ensure the immediate physical safety of the individual or others
    • prohibition of the use of restraint and seclusion as a punishment or as a substitute for a habilitation program
    • prohibition of the excessive use of chemical restraints and the use of such restraints as punishment or as a substitute for a habilitation program or in quantities that interfere with services, treatment, or habilitation for such individuals
    • the ability of close relatives or guardians to visit the individual without prior notice
    • program design that assures the most favorable possible outcome for those served and is appropriate to the individuals served by the programs
  • Rights provided under state law (Health and Safety Code, Chapter 592), including
    • the right to protection from exploitation and abuse because of the person’s intellectual disability
    • to the right to receive for the person’s intellectual disability adequate treatment and habilitative services that:
      • are suited to the person’s individual needs
      • maximize the person’s capabilities
      • enhance the person’s ability to cope with the person’s environment and
      • are administered skillfully, safely, and humanely with full respect for the dignity and personal integrity of the person
      • the right as a person with an intellectual disability, a group of such persons, or a person acting on behalf of a person with an intellectual disability to submit complaints or grievances regarding the infringement of the rights of a person with an intellectual disability or the delivery of intellectual disability services to DARS [the responsible state agency] for investigation and appropriate action

(c)If any record includes information on more than one child, the parent of those children shall have the right to inspect and review only the information relating to their child or to be informed of that specific information.

Please consider revising the language as follows: “A parent has the right to inspect and review information relating only to his or her child. Information about other children must be redacted.

The parent should have the right to see the record and not have to rely on the verbal interpretation of staff. Redacting information pertaining to other children allows inspection to occur.

§105.515.Staff Requirements.

(b)All direct service staff members must receive training before working independently and on an ongoing basis.

According to the rules referenced in subsection (c) of this section(1 TAC 15, §392.203), direct service staff must have a high school diploma and 40 hours of training to implement behavioral protocols independently with young children. In the absence of clear language defining and prohibiting aversive procedures and adopting the additional rights in the comments on §105.507, direct service staff should not work independently. Supervision once every two weeks is not adequate.

In rules as originally proposed in 2014, the requirements included having two years of experience with individuals with developmental disabilities. In response to public comment by providers about the difficulty of staffing, DARS deleted the requirement.

Forty hours of instruction are not adequate to address the requirements listed in the referenced rules, which include:

  1. formalized training on methods for data collection, procedures for implementing discrete trial teaching, prompting procedures, behavior management strategies for addressing problem behavior, and other ABA techniques and program specific methods;
  2. didactic instruction, workshops, readings, observation of modeling of techniques by supervisors, role-play with supervisors, and training in the natural environment in which supervisors provide specific feedback and additional training as needed;
  3. written exams (with criteria to determine mastery) or direct observation by BCBA supervisors of therapists working directly with children (with fidelity checklists to determine accurate use of procedures and criteria to determine mastery) to ensure individual acquisition of the skills necessary to accurately implement ABA treatments;
  4. the tasks in the Behavior Analyst Certification Board’s Registered Behavior Technician Task List and Guidelines for Responsible Conduct for Behavior Analysts that have been designated as relevant for behavior technicians;
  5. ethics and professional conduct training; and
  6. training on typical child development for children 3 through 15 years of age.

Notably absent from the list is mention of training on the rights of the children being served.

Most people will not understand what “all of the tasks in the Behavior Analyst Certification Board’s Registered Behavior Technician Task List and Guidelines for Responsible Conduct for Behavior Analysts” are.

For purposes of public comment, it would be helpful to either include or describe the content rather than to reference a title that may be inaccessible to many. If the title is in the public domain, please include the content or a link to it so that it can be inspected during the review and comment stage of rule proposal.

The referenced guidelines do not appear to lend themselves easily to adaptation to direct service staff members, i.e., it is not possible to immediately understand which precepts written for behavior analysts would apply to direct service staff, in what form, and to what extent. Guidelines for direct service staff need to explicit.

In conclusion, in the absence of federal oversight, DARS should provide sufficient guidance for its contractors with respect to aversive procedures and rights. Of keenest concern are the responsibilities of direct services staff who, with minimum education and training, will be authorized to independently work with children following protocols that may include aversive procedures. Reliance on third-party certification is not an adequate surrogate for agency oversight, regulation, and monitoring of potentially harmful practices. Please reconsider how this may constitute a violation of children’s rights and represent an area of potential risk to children, contractors, and the agency.

Thank you for the opportunity to comment on these proposed rules.

Sincerely,

 

Linda Logan, MPAff
Texas Council for Developmental Disabilities