April 27, 2017
The National Council on Independent Living (NCIL) is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the country.
NCIL would like to thank you for the opportunity to provide comments on the proposed revisions for the Centers for Independent Living Annual Program Performance Report (CIL PPR) released on March 8, 2017. Upon reviewing the proposed revisions, we would like to submit the following comments:
1. Reflect the Purpose of the Administration for Community Living (ACL) and Independent Living.
NCIL members are profoundly dismayed that the promise underpinning the creation of ACL – and NCIL’s role in it – is not being fulfilled. Since (at least) the early 2000’s, NCIL leadership has met with the Rehabilitation Services Administration (RSA) and ACL leadership recommending the same thing: Develop an annual reporting process that accurately reflects the impact of Centers for Independent Living. The draft generated for public comment is just more of the same. Sadly, our experiences with ACL are no different than our experiences with RSA. Just like RSA, the draft from ACL attempts to measure “inputs” (the budget information, for example), activities and processes that are not even aligned with “outputs”. ACL asks for comprehensive financial information yet only asks the CIL to report on services to Part C consumers. If the draft PPR were implemented, it will continue the long standing RSA habit of generating a useless pile of information that robs valuable time from the people who are doing the real work of IL: the integration of people with disabilities! Countless times, we have shared the results of NCIL’s major investment in Outcomes-based reporting only to have a miniscule reference in the draft PPR; report “outcomes, if any” is the language in the draft. It is beyond our comprehension that ACL has completely ignored a decade of NCIL’s hard work. It was our hope to become a partner with an Administration we helped to create.
2. Make a Few Key Decisions BEFORE Generating the PPR. Decide the purpose of the report!
a) Does ACL intend to have useful data on outcomes, results and impact or not? When visiting ACL’s web site, reports on Aging and on DD are posted but there is no information on IL. Unless there is vast overhaul of the draft PPR, there never will be anything worth posting! Moreover, it seems clear to NCIL membership that ACL has ignored a few key agreements that were made. The 2015 NCIL Conference included a presentation of NCIL’s work on the IL logic model and outcomes indicators. The membership in the room appeared to endorse the idea of moving in this direction. IL Unit staff were present at that conversation and seemed to be supportive yet the draft PPR does not reflect this understanding. Furthermore, attendees and ACL staff agreed that the Community Activities Table (Section D of current 704) is duplicative, unnecessary as well as time-consuming to collect and compile. And yet Section VI (Annual Program Performance) of the draft PPR is a newer version of the old Community Activities Table. As such, this task will be equally time consuming and another pile of useless information.
b) Is the purpose of the report an attempt to meet ACL’s duty to review / monitor CILs? Historically, the annual report has mixed up “monitoring” with “performance”. The draft PPR perpetuates this insipid practice (which is why information on the Standards and Assurances remains in the draft PPR). As formidable as IL’s monitoring task is, no report can substitute for the process of monitoring the presence / absence of Standards and Assurances at the implementation level.
Furthermore, ACL is NOT correctly interpreting the law. A primary duty of the IL Director is to review the CILs for compliance with Standards and Assurances; the contents of these reviews is the source for information generating the required “Annual Report to the ACL Administrator”. Therefore, the IL Director cannot fulfill the duty of reporting to the Administrator UNLESS reviews are being done!
c) Is the purpose to report on the use of Part C dollars only or is it to capture the larger picture of the CIL? As it stands now, it is hopelessly muddled; it asks for all financial resources but only some of the people served. For CILs who have done what they are supposed to do – generate the resources to better fulfill the mission – it is extremely difficult to manage this muddled expectation. If the decision is to report on only Part C dollars and only those served by them, then an accurate methodology for this process will need to be worked out with the people who actually have to generate this information! If ACL continues the destructive habit of working without people from the implementation level, then there will never be accurate information. ACL can’t have it both ways. If ACL wants to know about ALL of our revenue, then ALL consumers need to be considered in the report. If it only wants to know about uses of Part C funding, then detailed reporting on additional revenue is NONE of ACL’s business. Yes, the CILs are required to generate resources but that information is simple, as in “What is the total amount of resources in addition to Part C, that the CIL generated in the reporting year?”
d) Is ACL perpetuating the VR philosophy of disability or not? The concept of “significant disability” is based on the VR philosophy of “doing something” with people they considered “too disabled to work”. This philosophy is based on the 40+ year old Rehabilitation model that locates the problem within the person. Instead of a person’s disability being “significant”, perhaps a given state’s poor investment in Home & Community Based Services is a significant policy barrier for which a core service – systems advocacy – is needed! Eliminate the term “significant disability” in reference to the consumers served.
3. Acknowledge the legal obligations of ACL.
To reiterate points above, the law specifies the duties of the IL Director quite clearly. Among those duties are “to review at least 15%” of the CILs for compliance with Standards and Assurances. The results of these reviews are to be compiled in an annual report for the ACL administrator and for the public. The IL office is NOT fulfilling its duty to review CILs and therefore, cannot provide an accurate annual report. Instead, it is using the proposed PPR as a tool to compel CILs to monitor themselves. While the vast majority of CILs have always done this task with integrity, there is no consequence for a few CILs who don’t. Therefore, the IL Unit is perpetuating the age-old habit of ignoring the law when it is “too hard” to the DC folk to carry out. Instead, the responsibility is pushed down to the implementation level with absolutely no regard for the reality or complexity for those upon whom the burden is placed. The inevitable result is useless information and wasted time for honest, mission-driven CILs. It is unforgivable that the IL unit shirks its duty to review CILs. Given HHS’s huge distraction with major issues such as Medicaid block grants, not much else is on their radar screen, certainly (and probably fortunately) IL is an unknown. It is a perfect time for the IL Unit to generate creative ways to carry out the monitoring function. For example, would state DSEs consider financial support for this purpose? Are there funds within ACL that might be redirected for this purpose e.g. unfilled positions? Given the times we are in and the political leadership we have, do not waste the opportunity to be ruthlessly laser-focused on critical responsibilities of the IL Director.
4. Recognize that change requires time and money.
Ideally, there should be one year of lead time before any new reporting process goes into effect. CILs will need new software created, the funds to purchase it, the time to create new internal information gathering tools and to train staff. Adequate lead time and training reduces inconsistency and error. We ask that ACL identify the resources necessary to accomplish this task.
5. Recognize Opportunity.
The current administration intends to “reduce regulation” by eliminating two regulations for every new one proposed. NCIL suggests that a “lean and mean” PPR – one focused on Outcomes – is an opportunity to eliminate much of what has been a huge waste of time and effort resulting in piles of totally useless information. There is an opportunity to craft an efficient and effective method for “telling the IL story”.
To summarize: Start over! Use NCIL’s past work on Outcomes reporting as the starting point. The PPR draft is NOT a starting point. It is square in the middle of a tiresome, very old conversation!
Sincerely,
Kelly Buckland, Executive Director
Lou Ann Kibbee, President
Bruce Darling, Vice President
Jeff Hughes, Rehabilitation Act & IL Funding Subcommittee Co-Chair
Ann McDaniel, Rehabilitation Act & IL Funding Subcommittee Co-Chair
Dan Kessler, Outcome Measures Task Force Co-Chair
Pat Puckett, Outcome Measures Task Force Co-Chair
