Comment to Medical Care Advisory Committee re
February 13, 2014
My name is Jessica Ramos public policy director for the Texas Council for Developmental Disabilities (TCDD). Thank you for the opportunity to provide input on a major, fundamental shift in how community based services and supports are provided to persons with intellectual and developmental disabilities. The Zero Reject Policy has been a hallmark of the HCS program since its inception, making it the alternative to institutional services for persons with intellectual and developmental disabilities. The policy meant that persons with complex needs had the same access to community services as persons with less intense service needs. It meant that providers could not “cherry pick” who they would or would not serve as part of a business decision.
The mandatory participation policy as proposed suggests to individuals, families and the legislature that the community services system may be incapable of responding to the needs of some persons with complex behavioral needs. It suggests that there may be people unworthy of the opportunity to be fully included. As the Department understands, we strongly disagree with that perspective. It is acknowledged that some agency requests to the legislature to improve community based behavior supports have been denied and that some requests were inappropriately identified as having been met by other means. However, punitive mandatory participation rules that remove persons from the program for which they have a demonstrated need are not the answer.
Provisions relating to termination based on behavior remain in the proposed rule. This is especially disappointing because the Nov. 15, 2013, Texas Register indicated that references to termination based on an individual’s behaviors would be removed from the Rule. The Rule continues to rely on subjective criteria. We recommended including language that would ensure that behaviors that are a manifestation of a person’s disability could not be used to disqualify a person for Medicaid long term services and supports. The Rule as proposed, however, continues to allow a person to be terminated from the program for criminal behavior that can include shoplifting and other acts that may be attributed to a person’s disability and mitigated with adequate program supports. More focus on severity (danger to life or safety) and on conscious awareness and intent are critical and appropriate safeguards given the characteristics of individuals served in this program.
The proposed rule includes the creation of a Program Termination Review Committee. Problems, in addition to the existence of such a process, include that the participant is not permitted to be a part of the Review Committee and that there are no requirements for the Committee to problem solve and identify resources that would address the issue and preclude termination.
We also have strong concerns that the termination process would be allowed to proceed against the recommendation of the service coordinator since the role of the service coordinator in the HCS program is in part to consider alternatives that may be appropriate in order to maintain community placement. That a current placement arrangement is not meeting the needs of the participant is notably different than a decision that the HCS program overall cannot respond to each individual’s unique needs. The proposed Rule does not ensure that each participant is offered flexibility and reasonable accommodations to remain in the HCS program.
The Rule as now proposed is silent on what tools DADS will bring to bear to provide persons with appropriate accommodations. Providers and advocates have stressed the need for more flexibility and quicker access to Level of Need increases to address crisis situations. Providers, advocates, consumers and their families have documented their recommendations for greater access to community-based crisis stabilization services including behavior support teams, in home training in positive behavior interventions and supports and trauma informed care, emergency respite and other accommodations to meet the needs of the growing number of persons with behavioral health needs in the system. Since it is assumed that this policy would be used on rare occasions, the process should allow for consultation with internal and external behavior support experts, a mechanism to approve enhanced staffing, expedited Level of Need increases and/or a way to secure emergency respite for persons who have a demonstrated need.
We strongly believe that there is substantial room for improvement to the Mandatory Participation provision and that it not be recommended to move forward.
Thank you for considering our input.