FULL IMPLEMENTATION DATE 07/01/2010
Providers of Developmental Disability Services
It is a policy of DBHDD to ensure that an individual with developmental disabilities, their representatives/guardians, or agencies involved with the delivery of that individual's services may file and have reviewed human rights issues through a Regional Human Rights Council (HRC). Each Region will have a minimum of two councils. Human Rights Councils meet as often as necessary, but at least quarterly, with findings/resolutions provided in writing.
The purpose of this policy is to ensure the protection of health and human rights of persons with developmental disabilities served through the Division of Developmental Disabilities (DD), Department of Behavioral Health and Developmental Disabilities (DBHDD).
The Human Rights Council, as an advisory and review body, shall determine whether the human rights of an individual receiving DD services are protected by reviewing the following concerns/issues:
- allegations of or suspected individual rights violations;
- behavioral support plans referred by a Behavioral Program Review Committee (BPRC) which are designed to reduce challenging behaviors;
- individual support plans related to individuals being prescribed five (5) or more psychotropic drugs; and
- all requests for participation of individuals receiving DD services in experimental research to ensure adherence to the practices of DBHDD.
Service providers must follow all DBHDD policies, standards and guidelines related to health and human rights, including but not limited to:
- rights suspension
- restrictive procedures
- psychotropic medication
- allegations of mistreatment
- experimental research
The Human Rights Council policy exists to ensure practices of DBHDD service providers follow DBHDD Rules & Regulations, DBHDD Policies & Procedures, and Provider Standards regarding the following topics:
DBHDD Rules and Regulations related to:
- Client Rights
- Patient Rights
DBHDD Policies and Procedures related to:
- Informed consent for psychotropic medication
- Protection of human subjects
- Complaints and grievances
- HIPAA privacy rules
- DBHDD Provider Manual Community Service Standards
- Behavioral Program Review Committee (BPRC) – A committee comprised of regional or agency personnel who have the highest level of expertise in applied behavioral analysis (ABA) behavioral supports services within a region or for one or more provider agencies. The primary function is to evaluate the technical adequacy of all behavioral supports interventions and to make recommendations for improvement.
- Behavior Plan Subcommittee (BPS) - A subcommittee of the HRC that reviews all Behavior Support Plans after the plans have been reviewed by the Behavior Program Review Committee (BPRC). The Behavior Plan Subcommittee reviews the plan to make sure it is not in violation of the individual's Human Rights, and then the plan is returned to the Behavior Program Review Committee for final authorization.
- Challenging Behaviors – Behaviors that are defined as problematic or maladaptive by others noticing the behavior or by the person displaying the behavior. What is determined a challenging behavior can vary depending on what is accepted by the individual, community or by society.
- Human Rights Coordinator - DBHDD employee responsible for ensuring the provision of technical assistance, guidance, and training for the Human Rights Committee (HRC).
- Human Rights Council (HRC) – An advisory and review body comprised of local community members who provide independent oversight as a regional intermediary structure in matters related to the health and rights of citizens with developmental disabilities who reside in the state of Georgia. No spouse, sibling, child, contractor, employee, board member of a provider and/or employee of DBHDD shall serve as a member of the HRC.
- Interdisciplinary Team (IDT) – The people who create/write an individual's Individual Service Plan (ISP) to include but not limited to: Individual receiving support, Parent/Guardian, Support Coordinator, Direct Support Worker, Provider, Advocate, Therapist, Clinicians, Physicians, and Friends.
- Individual with Developmental Disability – Person in the community who is eligible for developmental disability services either through a DD waiver or state funded services.
- Provider – For the purposes of this policy, the term "provider" or "service provider" includes organizations that provide DD services that are financially supported in whole or in part by funds authorized through DBHDD.
- Provider Support Staff – Provider staff responsible for implementing recommendations from the HRC
- Psychotropic Medication - Those medications categorized as antipsychotic, anti- manic, antidepressant, anti-anxiety, and anti-obsessive drugs as well as other medications employed as treatment of psychiatric disorders. This does not include medications typically prescribed for extra-pyramidal side effects.
- Regional Office – An office of the Department of Behavioral Health and Developmental Disabilities, created pursuant to The Official Code of Georgia Annotated (O.C.G.A.); such office shall serve as the entity for the administration of behavioral health, addictive disease, and developmental disability services in a region.
The broad role of the HRC is to assist individuals with developmental disabilities to promote their health and human rights by addressing concerns of possible rights violations or restrictions.
Service providers must follow all health and human rights related policy and guidelines including, but not limited to, the rights suspension, restrictive procedures, psychotropic medication, allegations of mistreatment, abuse, neglect, or exploitation, and experimental research. No person shall be retaliated against or be denied services for presenting an issue to a regional HRC.
Any person who considers filing with the HRC is encouraged to resolve the matter informally by discussing it first with the staff members or other persons involved or Service Provider's Clients' Rights staff as specified in the Service Provider's Program's Quality Improvement Plan.
The individual receiving DD services is not required to use the procedures established by this Policy or Client's Rights Rules and Regulations in lieu of other available remedies, including the right to directly submit a written complaint to the Regional Director, or Deputy Director of the Division of Developmental Disabilities (the Division), or Governor's Advisory Council as provided in O.C.G.A. Chapter 37-2-4.
In addition, the HRC provides recommendations concerning overall health and human rights related practices. The Division Office, Regional Offices, support coordinators, providers and/or persons with developmental disabilities, representatives, guardians, individuals, associations, or agencies involved with the delivery or receipt of disability services shall refer cases for review to the HRC in the manner prescribed in these procedures.
The Division's Human Rights Coordinator is responsible for ensuring the provision of technical assistance, guidance, and training for the Human Rights Committee (HRC). The Human Rights Coordinator maintains the following information:
- current HRC membership lists
- current calendar year's regularly scheduled meetings, and
- copies of meeting minutes.
The coordinator must be made aware of all emergency HRC meetings via e-mail. Information flow between the Human Rights Councils and applicable parties outside of the HRC may be coordinated by the Human Rights Coordinator to ensure timely receipt of information by the HRC.
Human Rights Council Membership:
Each HRC is comprised of an odd number of members of no less than seven (7) persons and no more than nine (9) persons. One or more community volunteers from each category of the following categories listed below may serve on an HRC however, representatives from the first four categories are required:
- Medical Professional (one of the following required)
- Registered Nurse (RN)
- Pharmacist (required)
- Self Advocate (required)
- Parent and /or Guardian (required)
- Law Professional/Enforcement (one of the following required)
- Lawyer (Relevant field to DD services)
- Law Officer
- Business leader or Faith Community leader
- Educator active in the classroom and/ or administration
- School Teacher (Relevant field to DD services)
- College Professor (Relevant field to DD services)
- Advocacy Professional
- Paid ARC staff member
- Paid DD advocacy organization staff member
There may be no more than two individuals from any one category on the HRC at any time to provide a balance of perspectives. Should an HRC need expert consultation that a member of the HRC is not qualified to provide, the Human Rights Coordinator must be contacted immediately. The Human Rights Coordinator will then inform the appropriate state level official and aid in obtaining expertise.
Each HRC also has a Behavior Plan Subcommittee (BPS) comprised of a minimum of three persons to maximum of five persons (must be an odd number) to review the Behavioral Support Plans. The BPS is comprised of members on the HRC, one of which must be from the following categories: Self Advocate, Parent or Guardian, or Advocacy Professional.
Additional Human Rights Council Membership Requirements
- No contractor, employee or Board of Directors member of a Provider, Support Coordinator or employee of DBHDD may be a voting member. The Division of Developmental Disabilities staff will ensure orientation and training regarding duties and responsibilities to the members of the HRC.
- Members serve a maximum of three consecutive (3) years. Initially members should be appointed to staggered terms to ensure continuity across years.
- HRC members, agency administrators, family members, Division or Regional staff and persons receiving services may nominate members for the HRC. Prospective members complete an application and submit resume and/or a brief statement describing their qualifications and/or interest in serving on the council. All HRC members are unpaid. If funds are available self advocates/parent or guardian members may receive a stipend for travel.
- All decisions of the HRC and the BPS are made by a quorum. A quorum is comprised of one half of the HRC membership plus one additional member. Final decisions are reached through majority vote of the quorum. A vote may be cast via telephone/conference call if so needed.
- HRC members review nominations and vote to select by a quorum those members they feel are most qualified and committed to serve. The HRC Chair and Secretary make the final decision regarding the nominated candidate. If the nomination is accepted, the HRC Chair extends a formal invitation to the candidate and if accepted, the new member is oriented in regards to the HRC responsibilities. This orientation is coordinated with the Human Rights Coordinator to ensure that new members receive all required training.
- Former provider staff or former support coordinators may be nominated to serve after they have been disassociated from DBHDD service provider or support coordinator agency for a period of two (2) years and only if they have left the agency in good standing. No current employee or Board Member/ Director of DBHDD, DBHDD contractor, a DBHDD provider or a support coordination agency may be an HRC member. A HRC member must immediately forfeit their seat on the HRC upon the acceptance of an offer of employment with DBHDD or its affiliates.
Responsibilities of Human Rights Council Members
- The HRC shall elect a Chairperson and Secretary. The Chairperson and Secretary shall serve a one (1) year term. The Chair's responsibilities shall include facilitating the scheduled HRC meetings.
- Members must analyze the HRC packets prior to the review date, attend quarterly meetings, and make themselves available for rare emergency meetings. If an individual does not actively participate in the activities of the HRC by missing more than two (2) consecutive meetings, quarterly council meetings and emergency meetings, the Chairperson or Human Rights Coordinator notifies the member that their appointment is under review and may be rescinded.
- The HRC shall convene a minimum of once per quarter up to once per month as designated by the HRC Chairperson and as determined by a council quorum. The standard for active membership is not to miss 2 consecutive meetings, quarterly council meetings and/or emergency meetings.
- In the event that an emergency meeting is needed, the Chairperson may schedule a HRC meeting with 7 business days notice to committee members.
- In the event that a consultant serves on the HRC, they shall not vote on issues that may present a conflict of interest, nor shall they vote on situations in which they have provided consultation.
- In the event that an HRC member is guardian for an individual presented to HRC for review, he/she shall not be a voting member during such case.
- Regional Office, service provider, support coordinator employees or contractors may serve as participants upon invitation and as a resource to the HRC, but not as voting members of the HRC.
- Each HRC member is required to sign a statement which obligates him/her to maintain the confidentiality of the individuals, programs, providers and other matters discussed or read about in course of carrying out HRC duties.
- The current HRC membership list, current calendar year's regularly scheduled meeting schedule, and copy of meeting minutes must be kept current with the Division of Developmental Disabilities, Human Rights Coordinator. The Human Rights Coordinator must be made aware of all emergency meetings via e-mail.
Training and Guiding Principles for Human Rights Council
- The Division of Developmental Disabilities is responsible for ensuring adequate training and guidance to the HRC members.
- The Division's Human Rights Coordinator is responsible for ensuring the provision of direct training from appropriate DBHDD staff and/ or contractors and ensuring adequate guidance to HRC members.
- Prior to voting on HRC issues, all HRC members must receive training on:
- human and civil rights for persons with intellectual and developmental disabilities
- the roles and responsibilities of the HRC human rights
use of psychotropic drugs in the treatment of persons with developmental disabilities
- protections and safeguards when experimental research is proposed confidentiality, including HIPAA compliance
- statutory and regulatory requirements,
- agency policies and procedures, and
- behavioral support plan review for all HRC members
Council Review Duties and Decision Making
The Human Rights Council, as an advisory and review body, shall determine whether an individual receiving DD services human rights persons' human rights are protected by reviewing concerns/issues submitted by persons with developmental disabilities, representatives, guardians, individuals, associations, or agencies involved with the delivery or receipt of disability services regarding health and human rights issues.
- Issues Submitted to the HRC
- All rights complaints shall be filed with the service provider per Client's Rights Rules and Regulations. The HRC first verify that the complaint has been filed with the Client's Rights Subcommittee or its equivalent. In accordance with DBHDD complaint and grievance policy.
- The provider support staff is to submit to the HRC members any information discovered in investigation of the complaint seven (7) working days before the scheduled HRC meeting. Information shall include, but not be limited to: copy of the complaint, if applicable, resolution from the provider's investigation of complaint (see below); personal interview notes, and documents for review, correspondence and proper release of information.
- The investigation of complaint, as outlined in Clients' Rights, 290-4-9-.04, should include contact information for the Interdisciplinary Team (IDT).
- Each service provider shall prepare the necessary documents meeting the required criteria as identified by Client's Rights Rules and Regulations, of any issues needing HRC review.
- Council members will review materials submitted for HRC review and determine if it does or does not meet the HRC standards for approval for issues specific to rights suspension, restrictive procedures, psychotropic medication, allegations of mistreatment, abuse, neglect, or exploitation, and experimental research.
- From time to time, HRCs may request additional information from parties involved with specific issues submitted to the HRC. When such a request is made, the Human Rights Coordinator will expect a response to the request within seven (7) working days. If requested information is not received within that time, the Human Rights Coordinator will make the determination if there is sufficient information to continue the review and may contact the party responsible concerning the delay in receipt of information.
- Issues Submitted to the Human Rights Council by the Division of Developmental Disabilities
The Division of Developmental Disabilities may submit a human rights incident to the HRC. The Division of Developmental Disabilities shall submit pertinent information related to the complaint filed including but not limited to applicable data reports, documents for review, correspondence and proper release of information.
Council members review materials submitted for HRC review and determine if it does or does not meet the HRC standards for approval for issues specific to rights suspension, restrictive procedures, medication or other practices used for modifying behavior, allegations of mistreatment, abuse, neglect, or exploitation, and/or experimental research.
- Review of Behavioral Support Plans
The Human Rights Council shall delegate to its Behavior Plan Subcommittee (BPS) the review of plans that are designed to reduce challenging behaviors.
- The Behavior Program Review Committee (BPRC) submits to the HRC, all behavior support plans at least seven (7) working days before the scheduled HRC meeting.
- The HRC delegates responsibility for review of behavior support plans to the BPS, who determines if each behavior support plan does or does not meet its standards for approval for issues specific to rights suspension, restrictive procedures, psychotropic medication, allegations of mistreatment, abuse, neglect, or exploitation, and/or experimental research. The BPS review plans within 30 days of submission.
- The BPS submits its findings to the Chairperson of the HRC. The Chairperson and Human Rights Coordinator signs off on all approved behavior support plans. The Human Rights Coordinator returns all plans to the BPRC as "approved" or "needs revision" with suggested revisions included.
- Psychotropic Drug Use
The Human Rights Council must also review all of the following actions: (a) medication initiation and/or changes involving the use of five or more psychotropic drugs and (b) requests for individuals receiving DD services to participate in experimental research.
- HRC are to review all initiation of and changes in use of five or more psychotropic medications.
- When possible, the review should occur prior to the implementation of such procedures.
- The provider support staff shall submit to the HRC all relevant documentation, such as a current behavioral support plan, regarding initiation of and/or changes in the use of five or more psychotropic medication; this documentation is submitted seven (7) working days before the scheduled HRC meeting.
- In the event that a physician is not available for specific review of the medication documentation, the Human Rights Coordinator shall assist in finding a physician from another region to consult with the HRC for the purposes of this medication related review.
- Experimental Research and the Protection of Human Subjects
In the event that the HRC is made aware of complaints regarding Experimental Research and the Protection of Human Subjects, the HRC will immediately notify the applicable regulatory bodies as detailed in the Institutional Review Board (IRB) policies applicable for DBHDD. DBHDD utilizes the Department of Community Health (DCH) Institutional Review Board (IRB) to ensure protection of human subjects. Policies and procedures regarding the protection of human subjects and operation of the IRB are developed and maintained by DCH. Therefore, the DCH Protection of Human Subjects policy and procedures constitute the DBHDD directive on this topic.
- Referred Cases Found not to Directly Impact Human Rights
If the case does not fall into the purview of HRC standards for review, the HRC will document its resolution in writing and give notice to the party who submitted the complaint / issue and include information for appeal the process to the Division of Developmental Disabilities, Human Rights Coordinator.
- Case Review and Final Recommendations
- All HRC activities shall remain confidential in order to ensure the following:
- that internal quality improvement investigations and monitoring activities are completed fully and in an in-depth manner;
- to encourage candid evaluations;
- and that adequate corrective action is taken in all cases, review actions are taken and documentation is completed in furtherance of Clients Rights Rules and Regulations.
- Any recommendations made by the HRC are communicated to the Human Rights Coordinator, Provider Director and the complainant by the HRC in writing within five (5) business days following the HRC meeting.
- The recommendations of the HRC shall be recorded on a case specific information form that shall be signed by the eligible council members present for that review at the time of case hearing. Dissenting opinion(s) will be documented on the same form. Within ten (10) workdays' copies of the form shall be disseminated to the individual (s) involved, Provider, Regional Office, the Division of Developmental Disabilities Human Rights Coordinator, and Support Coordination Agency. The original report of the recommendations shall be kept in the HRC records at the provider agency and copies shall be distributed to the HRC Coordinator.
- Recommendations include a timeframe for HRC ongoing review to be set at the discretion of the council in intervals of week(s), month(s), or annually.
- The Regional HRC Chair person shall designate a council member to be responsible for providing support to the council chairperson. This support is to include the following:
- Scheduling of meetings
- Notification of council members, Division of Developmental Disabilities staff, Regional Office staff, the service provider staff, and support coordination agency of meeting dates and times
- Recording and dissemination of meeting minutes including recommendations of the HRC on the Minute/Data Collection Form. Follow-up to HRC recommendations will be noted.
- Appeals Process
When an individual with developmental disabilities, their representatives/guardians, or agencies involved with the delivery of that individual's services is dissatisfied with a resolution proposed by the HRC, an appeal may be filed with the DBHDD Division of Developmental Disabilities Executive Director or designee. In such situations, the Division Executive Director or designee will contact the HRC to request copies of all materials relevant to the complaint or grievance. The Division Executive Director or designee's review of the appeal shall be completed within 10 business days of receipt of the appeal and all relevant materials. The Division Executive Director or designee provides a final resolution for the Human Rights issue. A copy of the resolution shall be forwarded to all applicable parties and a copy of the final resolution shall remain on file with the Human Rights Coordinator.
No person shall be subject to any form of discipline or reprisal solely because he or she has sought a remedy through or participated in the procedures established by Client's Rights Rules and Regulations and this policy.
Obstruction of the investigation or disposition of a complaint by any person shall be reported. Staff members are subject to adverse action for engaging in such obstruction, in accordance with personnel policies of DBHDD or the personnel policies of the provider agency.
Time limits designated in this policy and those of the Client's Rights Rules and Regulations may be extended at each step by the HRC chairperson for good cause.
To successfully implement this policy's procedures regarding review of psychotropic drug use for individuals who are receiving five or more psychotropics prior to this plan's implementation, the HRC will utilize a tiered approach that begins with review of individuals at higher risk (as reflected by the fact that they are prescribed a larger number of medications).
Notification of Rights
In accordance to the Client's Rights Rules and Regulations, each Provider shall display a notice in a prominent place of the availability and accessibility of these regulations at each appropriate service site.
DBHDD Rules and Regulations: Client Rights, Patient Rights, and DBHDD Policies and Procedures
Incident Management in DBHDD Skilled Nursing Facilities and Intermediate Care Facilities for Individuals with Intellectual Disabilities, 03-615