Via email Medicaid_HCBS_Rule@hhsc.state.tx.us
December 7, 2015
Texas Health and Human Services Commission
P.O. Box 13247
Mail Code H-600
Attn: Kristine Dahlmann
Austin, Texas 78711-3247
RE: Public Comment on HCBS Setting Rule Surveys
Thank you for the opportunity to provide comments on the first draft of the Home and Community Based Services (HCBS) Settings Rule surveys. The Texas Council for Developmental Disabilities (TCDD) is established in federal law in the Developmental Disabilities Assistance and Bill of Rights Act and is governed by a 27 board members, appointed by the Governor, 60 percent of whom are individuals with developmental disabilities or family members of a person 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 HCBS Settings Rule transition process represents the state’s most significant opportunity to understand the current status of the HCBS system and ensure that programs are being implemented as intended. We continue to support the state’s assertion that Texas HCBS programs, by rule, largely comply with HCBS Settings Rule. It is the interpretation and implementation of those rules, policies and procedures at the individual and provider level that represent our greatest opportunity for improvement.
The participant surveys were tested with a number of program participants who indicate that there is much room for improvement. Many of the participant survey questions include too many concepts (and words!). We recommend that the final participant survey drafts should be field tested (20 people) and modified accordingly. Please feel free to call upon us to support you in this effort.
As a general comment, it appears that the surveys were authored by different state agency staff for different audiences. They would all be improved by a single person editing the documents so that similar questions are asked using plain language for all audiences. Surprisingly, the language used in the residential provider survey was far more accessible than the participant residential and day program surveys. Many of the questions in the HCBS surveys are similar to those used in the National Core Indicators survey. We encourage the survey leads to review the NCI questions and to use NCI formatted questions whenever possible and/or use them as a model in the next draft. The NCI survey is widely field tested and would allow state level comparisons.
The providers’ survey includes opportunities for open ended responses in seemingly every single section queried, while there are absolutely no opportunities for program participants to provide open ended responses. Because this was such a significant oversight, we strongly recommend that program participants, too, have opportunities to provide open ended responses and that they be aggregated according to standard survey methods.
We understand that the Health and Human Services Commission intends to contract with the same entity responsible for gathering input for National Core Indicators. We recommend that those surveyors enter into a formal relationship with the Texas A&M Center on Disability and Development to provide Person Centered Thinking training and guidance on the structure of the questions and other survey strategies.
We expect contract requirements to include guidance to interviewers to report identified incidents of abuse, neglect and exploitation. Interviewers should also be required to help program participants to contact the service coordinator if the person indicates that they want to live elsewhere or seek different day services, as this survey process could be the first time that a person becomes aware of their control and choice.
Results and Outcomes
There have been varying messages from CMS and HHSC with regard to what will be done with the survey responses. We know the surveys are intended to identify and address systemic issues in HCBS settings. It appears to advocates that CMS has indicated that the purpose of surveying both program participants and their providers is to ensure that participants are experiencing what providers are reporting. Therefore, comparing the experience of participants and their specific providers would seem necessary for a review of specific settings. However, we understand that HHSC staff have claimed in open forums that the state will not be identifying and addressing location specific deficiencies. We continue to request clarity with regard to what will be done with the results of the surveys. We understand that this is a significant and daunting process, but the potential for shifting the balance of control of these program to the individuals and expand community integration opportunities should not be lost.
The participant survey suggests that the program participant will be identifiable, but it is unclear who would be responding for the survey at the provider level. We understand that provider operations are different across the state and that the task would not be assigned at the same staff level across the board. However, the instructions should be clear that staff with knowledge of the person(s) living in the home would be involved in the survey process and not solely dependent on provider central administration staff. That person or persons should be identifiable.
Generally, we are concerned that providers appear to be permitted to respond that they ‘don’t know’ to too many questions. What level of ‘don’t knows’ will be permitted for response compliance and what level will be remitted for repeat completion?
It appears that the survey is designed to minimally address issues in day habilitation rather than address issues relating to providing meaningful day activities. Employment assistance is not referenced by name in any of the surveys despite the fact that it is a defined service in each of the HCBS waivers and the fact that Texas is an Employment First state. We suggest that not adequately addressing employment assistance is a missed opportunity.
Program participants in residential settings have no expectation of access to minimal personal spending in rule, policy or practice. Advocates have identified this issue as one that should be addressed in the transition plan, yet it is not addressed in the survey, nor has it been identified in the State Transition Plan. We suggest that not addressing access to personal spending in the surveys is another missed opportunity.
Attached we’ve included the surveys that were provided by Department of Aging and Disabilities staff at the November 5th TCDD Committee of the Whole meeting, comments regarding survey content, and comments provided by a Council member regarding survey method improvements.
Thank you for your work on the HCBS Settings Rule Surveys. Please feel free to call upon TCDD to support you in this important effort.
Public Policy Director
Attachments: Survey Drafts Provided to TCDD
Survey Comments (content specific)
Survey Comments (survey methods)