2007 NCI Steering Committee Meeting Minutes

  1. Welcome
  2. Introductions- In person: Val Bradley (HSRI), Sarah Taub (HSRI), Josh Engler (HSRI), Chas Moseley (NASDDDS), Nancy Thaler (NASDDDS), Bob Gettings (NASDDDS), Angela Rapp Kennedy (NASDDDS), Roger Stancliffe (University of Minnesota), John Butterworth (Institute for Community Inclusion- ICI), Amanda Fullerton (OK), Genny Gordon (OK), Jon Sassi (WV), Scott Phillips (DE), Janet Adams (WA), Darlynn Thomas (SC), Sue Babin (RI), Laura Nuss (CT), June Bascom (VT), Chris Newman (WY), David Heath (WY), John Abernathy (TX), Janet George (MA), Pam Fowler (AR), Rie Kennedy-Lisotte (GA); Over the phone: Giusi Chiri (HSRI), Kerri Melda (HSRI), Brian Lensch (AZ), Kathy Sheppard-Jones (KY), Dana Olsen (PA), Cindie Underwood (IN), Barbara Pankosky (CT), Robert Despres (CT)
  3. Chas Moseley (NASDDDS) brought meeting to order and welcomed all. Val Bradley (HSRI) stated that NCI was celebrating its 10-year anniversary this year, and over the last 10 years it has grown significantly in terms of size, complexity, and its influence. Because of these changes, Val said that a main focus of this meeting should be to discuss new approaches; going from the informal processes and procedures of 10 years ago, to thinking about and creating new processes and procedures for a project which is much more “national” than ever before. Val mentioned that she and Chas wrote a “Perspectives” journal article for Intellectual Disabilities (formerly Mental Retardation) that reflected on 10 years of NCI. That article has just been accepted for publication.

II.NCI Program Update

  • State Participation- Sarah (HSRI) indicated that NCI currently has 23 States participating, plus one regional center in Orange County, California. Also in California, the Bay Area region (which consists of three regional centers) is currently involved with NCI as a pilot project. The state of Indiana rejoined this past year. WashingtonD.C. is not currently an active NCI member. Two additional states are strongly considering joining next year, which would bring the total number of NCI states to 25.
  • Status of Data Submitted for FY2005-2006- Sarah (HSRI) gave a break down of the data submitted for 2005-2006: Consumer Survey- 20 states submitted data (most ever); Adult Family Survey- 14 states; Family Guardian Survey- 10 states; Children Family Survey- 7 states; Employment Data- 12 states (possibly 14); Staff Stability Data- 7 states; Board Representation Data- 8 states (possibly 9); Incidents Data- 5 states (possibly 8); Mortality- 8 states (possibly 11). Sarah asked states to look at page 8 of PowerPoint presentation handout* that showed data HSRI expected from particular states but had not received yet.
  • Status of Current Reports-

Sarah (HSRI) gave the following status on current reports: 1) Consumer Report- A draft would soon be sent out to the states for their review. Sarah stated that since there was more data than ever before, it took a lot longer to clean the data, and the estimated time that HSRI thought it would take to complete this report was overly optimistic. The amount of time needed to clean and analyze the data for all 20 states should be approximately six months. Sarah said that ideas on how to speed up the data cleaning process, and in turn the timeliness of the reports, would be discussed later in the meeting. 2) Family Reports- drafts were sent out. 3) Employment Data- analysis in progress. 4) Staff Turnover Report- final report has already been completed and sent out to the states. 5) Board of Directors Report- a draft has been completed and sent out to the states for review. 6) System Data Report- currently working on. Sarah stated that conference calls will need to be set up to review incident and mortality indicators (including a discussion of whether or not to release incident and mortality data to the public,which would entail changing the current policy of keeping these reports internal) and to discuss future collection of the data. Val Bradley (HSRI) stated that the Government Accountability Office (GAO) is doing a review of quality measures in Home and Community Based Services (HCBS) services on the Developmental Disability (DD) side. Mortality review is one of the quality areas that the GAO is looking into measuring. GAO has asked HSRI for NCI mortality data, which has not been released to them at this point. HSRI has given GAO mortality indicators and information on “best practices”. Val asked that states think about how much mortality data they would consider releasing to the public.

  • Indicator Development: 1) Access to Services by Race, Ethnicity, Gender, and Age (i.e., Penetration Rates)- determining the percentage of people with intellectual disabilities served by race, ethnicity, etc., compared to the general population by race, ethnicity, etc. Sarah (HSRI) stated that a framework to gather this data is currently being created (census data would be used to gather information on the general population). She asked if any states would be willing to volunteer to test gathering the data; Connecticut, Vermont, Oklahoma, Arizona, and Arkansas agreed to.

2) Sarah (HSRI) suggested that the list of indicators be reviewed to determine if there need to be any changes. Most of the indicators have not changed in 10 years. Sarah suggested that this process start at the NASDDDS Mid-Year Meeting in May of 2007. Nancy (NASDDDS) suggested that a crosswalk of NCI indicators be done to see if they would be appropriate to provide information for the CMS 372Reports on Medicaid waivers (which CMS is or is about to require states to provide annually). This report will require states to answer a series of evidence questions (i.e.,provide evidence that everyone on a waiver has been evaluated for level of care; that health and safety are assured, etc.). Genny Gordon (OK) said that Oklahoma is using a few NCI questions in their application for an In-Home Supports Waiver. They are also using NCI as a quality measurement for their Community and Class Waivers. Chas (NASDDDS) stated that he has a paper that explains how to lessen NCI administrative costs (claim FFP) through using information for CMS activities, and he would be willing to send the paper to whomever wants it.

  • Charts Page and Other Website Updates- Sarah (HSRI) mentioned that the Consumer Survey data from 2005-2006 is up on the Charts page. Also, there is a filter that allows states to look at 2004-2005 data. Sarah asked who has already accessed the Charts page and not too many states responded. Sarah reminded states that they could email Josh Engler (HSRI) for the Charts page username and password, which is a different username and password from the Tools page. Sarah said that states should call or email Josh first for any questions. Sarah briefly explained that the Charts page presents Consumer Survey data, there are filters to access the data by different categories, and that the charts can be copied and pasted according to the instructions on the website. States seemed excited about obtaining the data through the Charts page. Sarah proposed three ideas to change/add to the webpage: 1) Adding “guest accounts” for limited viewing of charts (totals only; one question in each subsection). Cost- $1,000. 2) Data uploading function- would enable states to upload files and make it easier for HSRI to track data submissions. Cost- $9,000. 3) Online survey forms with flexible interface for adding and rearranging questions. Cost- $15,000. June Bascom (VT) asked if the states could have different access accounts…Sarah said that should not be a problem. Chas (NASDDDS) said that NCI should be moving to a web-based format where the data is not accepted unless it is correct under NCI guidelines. Bob Gettings (NASDDDS) suggested building in an auto-reminder for states to send in their data, which could help in alleviating some of the past problems of obtaining timely data. Chas mentioned that the auto-reminder could include a list of whose data is outstanding. Sarah agreed that these suggestions on making NCI more web-based would bring NCI up to date technologically. However, since some states have their own questions on the surveys, a flexible interface would be needed. Laura Nuss (CT) mentioned it being too time consuming to enter each individual’s data into a website because they scan their data and do not enter it by hand. Sarah stated that although some states scan their data, most do it by hand. Scott Phillips (DE) suggested that families could also enter their surveys via website/online. Sarah said that these proposed features were specific to the Consumer Survey at this point. Family surveys could maybe be entered through “Survey Monkey” or something similar. John Abernathy (TX) asked if the website (or whatever format is used) could help states with cleaning before NCI gets it. He stated that the data going back and forth between the state and NCI many times during the cleaning processhas beenproblematic. Sarah agreed that this has been a problem.
  • Newsletters, Data Briefs, and E-bulletins

Sarah (HSRI) discussed the new “The Indicator” newsletter (copies were passed out to states later on in the meeting). Val (HSRI) mentioned the e-bulletin: NCI fort’NIGHTLY NEWS and how it was being used for data information/collection issues, new things to announce, etc. She asked states to send Josh (HSRI) any feedback on the e-bulletin. Sarah stated that two Core Reports are currently being worked on- Case Management and Employment.

  • Kentucky Request for Data Access- Sarah (HSRI) asked states to read the request* and that HSRI will email the states after the meeting asking for approval or disapproval of the request.

III.Data Integrity Discussion

  • Sarah (HSRI) stated importance on improving the quality of data, not only to make HSRI’s job easier, but for the states to be able to have a more accurate representation of the population being served.
  • Giusi Chiri (HSRI) presented “Maintaining Data Quality~ Guidelines For NCI States”- Handout*
  • Sarah (HSRI)said that the key for the data to be as correct as possible is to follow the NCI Consumer Survey Codebook. HSRI staff members are willing to help state data people go through the codebook to make sure everyone is on the same page. Sarah said that in the past, HSRI has often noticed data discrepancies several weeks or months after the states have sent in the data, which did not allow for expedient changes/collaboration with states. HSRI will now review states data as soon as it is received and will collaborate with states ASAP after the review to try and correct any problems with the data immediately. If we can get a data uploading feature on the website, this should improve the data submission and review process. HSRI needs standardized data to ensure that the reports are accurate. Sarah stressed that these guidelines be shared with the “data people” in each state.
  • Brian Lensch (AZ) asked if the Family Comments data can be put into more than one field into SPSS. Since SPSS only allows 255 characters per field, comments are getting cut off. Giusi (HSRI) suggested the Family Comments should be put into Microsoft Word if possible. Brian said that using Microsoft Word was problematic for him as he wanted to enter the data into only one system or document. Giusi said the comments could be put into two, three, or more fields in SPSS.
  • June (VT) stated that she thought the NCI data guidelines were welcomed and looked really good. She stressed the importance of all the states getting their data correct and turning it in on time, given that if one state’s data is delayed, it delays all the other states data as well. June also stated that after 10 years of NCI, it was a good time for HSRI staff to become tougher on the states in getting their data correct and in on time.
  • Val (HSRI) said that it is very important that the data on functional characteristics (i.e.- behavior, diagnostic) be done (and be done correctly) as it is used for risk adjustment. If we do not have this data, the statistical process for which is used for comparing data between states, becomes less and less reliable.
  • Sarah (HSRI) mentioned that the highlighted background survey questions on the consumer survey are the ones used for risk adjustment. The most recent consumer survey, out of the 13 adjustment variables, only three or four were able to be used, as there was too much missing data on the others. [N.B. After further review it appears that only two variables were dropped out of the analysis – frequency of seizures and presence of problem behavior.]Sarah stressed how important it was for states to collect this information. She indicated she understands that for states it is difficult to collect this information and that some states might not want to ask some of the questions for various reasons, but that the questions are critical to the analysis, and it is unfair to the other states that do collect this information not to be able to have all the states data available for comparative analysis. If these states have any questions concerning collecting this data, they can call HSRI staff.
  • Val (HSRI) said that since there are now a large amount of states participating (23) in NCI, there are that many more different eligibility criteria for people to receive services. If states want to be able to compare themselves with other states, then it is crucial that these functional characteristic data are collected so we can adjust these differences and allow the states to be compared with one another.

IV.Consumer Survey Subcommittee Update

  • Sarah (HSRI) stated that one conference call has already been conducted with the Consumer Survey Subcommittee (on 02/16/07) regarding updating the Consumer Survey. It has been several years since the Consumer Survey has been changed. HSRI has been collecting suggestions over the years on how to update the survey. A few of the proposed changes discussed during the conference call include: 1) clarifications of who may respond to each section; definition of advocate (specify that it should be someone outside of the service system), 2) update wording to include “Mental Retardation/Intellectual Disability” instead of just “Mental Retardation”, 3) re-working questions on weight and physical activity (e.g., using Center for Disease Control definition for “physical activity”), 4) add back residential setting size (this item was previously on the Consumer Survey and was taken off because of concerns of accuracy; given its importance the proposal is to clarify the question and add it back to the survey), and 5) re-work definitions of self-directed supports.
  • Sarah (HSRI) suggested that the Technical Group should reconvene. This group existed previously and could provide technical help/advice to the Subcommittee regarding changes to the Consumer Survey and other methodological issues.
  • Roger Stancliffe (Univ. of Minnesota) stated that it is important to compare information not only between states but also between the general population in states and in the country; a “compared to what” question/test. Roger said that if questions could be tweaked to make it easier to do this (e.g., rework questions on weight and physical activity), then better comparisons could be made. An example of the “compared to what” questions would be concerning people with disabilities living in the community as opposed to an institution. It is almost universal that living in the community is preferable to living in an institution…but, now it should be asked if people with disabilities living in the community have lives as good as the general population living in the community. If we put ourselves in a better position to answer the “compared to what” questions, we are in better position to show what are good services and good policy.
  • Nancy Thaler (NASDDDS) said that there are two thresholds to determine “self-directed supports”- 1) can people with disabilities hire/fire staff, and 2) can people with disabilities control their own budget (and how much budget can they control). Nancy stressed the importance of states using NCI for their waiver’s quality obligations and regulations.
  • Genny Gordon (OK) said that on their surveys they have coded what type of waiver the consumer is on (for their Family Surveys, not for their Consumer Survey).
  • Val (HSRI) stated that it is important to determine which consumers are on waivers and which are served using ICF/MR funding. It can be difficult for interviewers to obtain accurate information about funding type. Service Coordinators/Case Managers, provider staff, families and others whoprovide background information do not always know what type of funding the person receives.