9 CSR 45-3.040 - Rights of Designated Representatives, Parents, and Guardians

PURPOSE: This rule prescribes policies for designation of representatives and recognition of certain rights of designated representatives, parents and guardians of individuals receiving services from the Division of Developmental Disabilities (Division of DD).

(1) Definitions.
(A) Designated representative- a parent, relative, or other person designated by an adult who does not have a guardian. The designated representative may participate in the person-centered planning process and development of the individual support plan, at the request of, and as directed by, the individual.
(B) Circle of support-team supporting the individual and participating in the person centered planning process.
(C) Person centered planning process-a process directed by the individual, with the inclusion of a circle of support created by or with the individual, which may include a guardian, public administrator, the individual, and/or persons freely chosen by the individual who are able to serve as important contributors to the process. The person-centered planning process enables and assists the individual to access a personalized mix of paid and non-paid services and supports that will assist him/her to achieve personally defined outcomes. These trainings, supports, therapies, treatments, and/or other services will become part of the individualized support plan.
(D) Individual Support Plan (ISP)-A document that results from the person centered planning process, which identifies the strengths, capacities, preferences, needs, and personal outcomes of the individual. The ISP includes a personalized mix of paid and non-paid services and supports that will assist the person to achieve personally defined outcomes.
(2) The Division of DD shall recognize that the ISP process is directed by the individual and their circle of support. Parents and legal guardians, who are willing and able to exercise their rights, may participate in person-centered planning, development and implementation of the ISP, and/or referral as set out in this rule.
(3) As set out in section 633.110, RSMo, parents of minor children and youth and legal guardians have the right to approve or refuse supports or placement of their children or wards.
(4) Adults who have not been declared legally incapacitated may give their written consent for parents, relatives, or other persons to serve as their designated representative to advocate for and advise, guide and encourage the individual and members of the individual support plan team in developing and implementing individual support plans. Written consent for designated representatives shall include written authorization to disclose protected health information.
(A) In accordance with the federal Health Insurance Portability and Accountability Act of 1996, as amended, and departmental policy, the consent shall authorize the designated representatives' access to those individual records specified by the individual and for periods of time specified by the individual.
(B) Designated representatives shall not have the right to approve or refuse referral, support, or placement of individuals and should act as the individual's advocate against or in support of recommended changes.
(C) Individuals may revoke their consent in writing at any time and the Division of DD and all parties responsible for the implementation of the ISP shall recognize the revocations immediately.
(D) Written consents and revocations shall be maintained in the individual's ISP and copies shall be given to designated representatives.

(5) If facility staff finds that a parent, guardian or protector is acting contrary to the best interest of a client by preventing or disrupting the client's care or habilitation, the staff shall notify the head of the facility of their findings. If the head of the facility concurs with the findings, s/he shall provide written notification of the findings to the parent, guardian or protector.

(A) If the client is a minor, the head of the facility may consult with juvenile court about the findings and then take appropriate action as authorized by law.

(B) In the case of a legal guardian, the head of the facility shall consult about the matter with department attorneys and the probate division judge supervising the guardian and, if indicated, take appropriate action through the court.

(C) In the case of a protector, the head of the facility shall allow the protector to present an appeal in person or in writing regarding the findings. If the head of the facility continues to concur with the findings, the protector may further appeal the notice of nonrecognition to the division director, who shall review the decision of the head of the facility and suspend, modify, affirm or reverse the action of the head of the facility. The division director shall notify the head of the facility and the protector in writing of the decision. The decision of the division director shall be final.


9 CSR 45-3.040
AUTHORITY: section 630.050, RSMo 1994.* This rule was previously filed as 9 CSR 501.055. Original rule filed March 4, 1992, effective Aug. 6, 1992. Amended: Filed May 25, 1995, effective Dec. 30, 1995. Amended by Missouri Register January 3, 2017/Volume 42, Number 1, effective 2/28/2017

*Original authority: 630.050, RSMo 1980, amended 1993.

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