In 12 VAC 30 – 122 – 200 the regulations set forth the standards for assigning level 6 or 7 (extraordinary medical/behavioral needs) to an individual; however, as written the regulations create confusion about the initial assignment, do not address changes in actual practices for assignment post transition to the SIS – A and fails to provide the transparency that is essential to a basic system of checks and balances that provides protection for individuals who should be assigned to these higher levels of support need. While use of the word “or” (instead of and) in the level assignment criteria table for level 6 and 7 would appear to indicate there are 2 ways to be assigned that level – 1st having a score on the pertinent questions that is higher than the threshold score and 2nd submitting relevant category information for a review that establishes the basis for an assignment. However, this interpretation of the plain text would be wrong as the State has adopted nontransparent practices, that are being implemented now, that make the score on the pertinent questions irrelevant to the actual assignment and changes assignment levels regardless of the score based on a nontransparent review.

1. The initial assignment to level 6 and 7 is completely nontransparent. When first introduced there was a clear and transparent standard for the initial assignment of individuals to these levels – simply, if your score on the pertinent questions exceeded the threshold level this is where you were initially assigned. With the transition to the SIS – A, this transparent standard was abandoned and now the initial assessment is based on a “complex algorithm”/ “sophisticated algorithm” according to a representative from DBHDS in a phone conversation. The same representative stated “there is no way a provider could determine a higher level assignment based on the data you are provided”. I would point out that this is also true for the individual, guardians, authorized representatives, support coordinators, case managers and any other individual who would advocate for the individual being evaluated to protect their individual rights. As a result, the algorithm process is completely and totally nontransparent. When asked, there was no information on the assumptions that went into the algorithm, the weighting of factors in the algorithm or even what factors are considered in the algorithm (are they limited to factors in the supplemental questions?) Which indicates a lack of transparency even about the basics of the current approach. Despite the State’s defense of the algorithm as “complex/sophisticated” this is not the same as transparency and the algorithm should not be accepted until it is vetted as Cathy O’Neil Technology writer for Salon states; “there are a lot of different ways that an algorithm can go wrong and what we have now is a system in which we assume because it’s shiny new technology with a mathematical aura that it is perfect and doesn’t require futher vetting. Of course, we never have that assumption with other kinds of technology”. The absence of transparency in the initial assignment precludes the necessary further vetting and creates unknown risk of miss assignment with no recourse.

2. The review verification process for level 6 and 7 assignment lacks transparency. Importantly, note that changes in the review verification practices have changed this review from an option for inclusion in a higher level, to a device for exclusion from higher levels; making transparency essential. Insufficiencies in the transparency of the review process appear before, during and after the actual review. The review process is initiated by a short request for information to verify the score that provides a few examples of possible inclusions; however, there are no criteria for a verification which would indicate areas to be addressed in a verification, there are no standards that would indicate when information is sufficient to provide a verification and no indication of what questions should be addressed in the verification materials…etc. Thus, even before the actual review begins there is no transparency nor objective standards for what the review will entail. I (like other providers I have spoken with) sent in documentation to establish the need for the service, the frequency and type of support need and that the estimated time recorded in the SIS supplemental questions was a significant underestimate of the actual support time spent---only to receive back a statement that said, without explanation, “not verified”. Since the actual review is done in Richmond without other respondents there is no transparency during the review and as the example above indicates there is no transparency for the rationale behind the results of the review after it is completed. Transparency requires disclosure of the rationale behind a “not verified” determination – was there just one piece of paper missing, in what area did the documentation fail to meet the standards, what would meet the standard etc.? The absence of transparency in the review process precludes the necessary further vetting/compliance of the review process and creates known risk of mis-assignment based on technical lapses outside the control of the individual who has no recourse.

The absence of transparency permitted in assigning level 6 and 7 to individuals by these regulations, creates an unequal process that provides power and rights to the government with no equivalent power or rights for the individual to protect them from the government; resulting in unequal treatment, an unfair reduction of resources and the threat of more significant future harm:

1. The nontransparent assignment processes unfairly exploits a procedural imbalance that favors the State over the individual. At the simplest level, the State has given itself the right to appeal a SIS score on the supplemental questions but continues to deny an individual the right to appeal a SIS score on any questions/domains. The State may counter that it’s not an appeal it’s a “verification review” which is a distinction without a difference and provides no rationale for not allowing an individual to initiate a meaningful “verification review” of the scores they find suspect. This process also creates a data evaluation double standard, if the expertise of the trained SIS assessor is good enough for scores the individual can’t appeal why is it not good enough for scores the State wants to appeal; a clear inequity. As indicated in the analysis above, the negative impact of this blatant procedural/data imbalances is magnified by the lack of transparency in the procedures designed to exploit the imbalance.

2. The nontransparent assignment process is being used to deny individuals equitable funding based on their level of support need without any checks, balances or recourse. There is at least one individual in the very small group of individuals I work with who met the old initial criteria of crossing the numerical threshold, had documented every aspect of the claims on the SIS score sheet being reviewed, but was denied this higher-level placement by the nontransparent process. While the exact number of persons who are being denied a higher-level placement under the nontransparent process is unknown, the germane Frequently Asked Questions section of the website had to respond directly to the concerns that individuals were not receiving proper level assignment based on their score under the old transparent system; indicating at the very least this has been a “frequent” occurrence since the change to the nontransparent process. Thus, this nontransparent, unchecked and unbalanced process is being used to reduce the overall budget and the distribution of resources to specific individuals who will be harmed if the change does not represent their true support needs. This should be unacceptable and the presumption should be that the secrecy of the nontransparent process should be viewed highly skeptically as President Woodrow Wilson stated; “we believe it a fair presumption that secrecy means impropriety”.

3. Regulatory acceptance of a nontransparent process for assigning extraordinary levels creates a precedent that all but assures future and more significant abuses. The State has been very open about their desire to use these mechanisms to reduce the amount of funding provided to currently served Individuals to provide funds within the budget to expand the number of individuals served. As proven above, the nontransparent process for assigning extraordinary levels has clearly been employed to accomplish this objective by excluding individuals from the higher levels who met the criteria under the transparent process. The algorithm provides a clear mechanism for pursuing this objective without any responsibility for the results as Cathy O’Neil (previously cited) makes clear; “the major problem with our blind trust in algorithms is that we can propagate discriminatory patterns without acknowledging any kind of intent.” The exact same flaw is created with blind trust in the nontransparent review process. Thus, the lack of transparency in assigning higher levels can be used to accomplish budget objectives regardless of the negative impact on the individual without any checks, balances or recourse. The risk of unfair, inequitable and harmful level assignment will only increase if this lack of transparency is not addressed as Edward Teller states “secrecy once accepted, becomes an addiction”; given the state’s tendency to prioritize budget considerations over the individual this is an addiction the individual can ill afford.

Preemptively, because the State does not provide any opportunity for rejoinder and often sets up “straw man” interpretations of criticisms with simple responses:

1. The burden of proof for the appropriateness of these processes should be on the State not the individual. The State has provided absolutely no rationale whatsoever for the change from the original transparent standard for inclusion, adoption of the algorithm or the nontransparent functioning of the review process. The data provided in the report to the Gen. assembly 10/1/17 indicated that only 13.8% of individuals in the population qualified for the higher levels under the transparent system; given the copious amounts of literature which indicates that the population exhibits a much higher occurrence and degree of extraordinary need in these areas there is no reason to believe that this figure is inflated inappropriately; in fact in that document they declared it as proof the system is working. There is also no clear rationale for the algorithm offered anywhere it just slides in and it’s use creates a grossly unfair data double standard; the appropriate statistical responses to the supplemental questions can be established much more objectively by the assessor generating supplemental question scores than they can be for the much more subjective generation of domain element scores so they should demonstrate more trust in their trained assessors in this area than in the areas where no score appeals are permitted. In fact, there is no rationale for, vetting nor empirical support for use of the algorithm at all. Finally, the State should be required to prove beyond a shadow of a doubt that the level of non-transparency/secrecy they have adopted with these practices is justified and consistent with the principles of good governance.

2. The algorithm is “proprietary”. It may well be, but if so, this would be an argument in favor of not permitting use of the algorithm because it will never be made transparent and as this analysis clearly indicates nontransparent interactions between individuals and their government should not be tolerated, without extreme justification. The use of a nontransparent algorithm eliminates the potential for checks and balances that are essential to the fair and just operation of the government function. Transparency is particularly crucial in this government function where the government reaches into and significantly impacts the daily life of the individual.

3. The number of changes in level assignments has been insignificant. Initially, it is important to remember the analysis above which indicate that the number of changes which resulted in a lower level assignment since adoption of the nontransparent process has been “frequent”. Only the State has access to the actual data again a lack of transparency. The state may attempt to defend their position by pointing to the analysis by C. Stierer and K. Hawkins with DBHDS in their Analysis of Virginia’s Levels System Utilization with the SIS (3/22/18) which indicates the absence of significant changes in levels for individuals with 3.25 or more years between their SIS evaluations, which would presumably include some people assigned to level 6 or 7 under the old transparent system who were reevaluated under the nontransparent system. This defense is inadequate for a variety of reasons – 1st it does not break out where the level changes occurred and there is no way to separate level 6 or 7 changes from those in other areas which would be necessary to draw the conclusion the state desires; 2nd the change in the levels between these 2 time frames is negative and identified as statistically significant in figure 1 of the study; 3rd figure 2of the study probability density, clearly indicates that over 600 people had their level reduced in the comparison of the 2 time frames; this figure would represent over 40% of the individuals who were originally assigned to level 6 or 7 if this is where the dominant change occurred (which is likley); providing evidence of significant progress in pursuing the budgetary objective and significant denials for previously justified higher level assignments; 4th even if the total number of individuals harmed by the nontransparent process is relatively low this response is inadequate to address the unfair, inequitable and unchecked abuse for even a few individuals receiving services in Virginia.

Recommendations: 1st – revert to the transparent system that used the score generated on the supplemental questions to assign individuals to level 6 or 7 whenever that score exceeded the published threshold; this would remove the algorithm, reduce the data double standard and protect the individual from review (except where fraud or deception are suspected) and create balance verses the process that unfairly benefits the government budget concerns at the expense of the individual – if the trained assessors scores have to be trusted unquestionably in all other areas why not in this area that is significantly more easily, accurately and objectively evaluated? 2nd – correct the structural/systematic imbalance created by giving the State the right to appeal/verify a SIS score on the supplemental questions with a corresponding right for individuals to appeal/verify a SIS score – why is it that what’s good for the goose is not for the gander? 3rd – require transparency in the assignment of level 6 and 7, this transparency should be required for evaluation of the algorithm and for the review process with identified criteria, standards and written justifications to promote transparency before and after verification reviews. Transparency for these processes would provide important checks on the government and provide records that can be used to stem abuse; as Supreme Court Justice Sandra Day O’Connor stated; “public records are one portal through which the people observe their government ensuring its accountability, integrity and equity while minimizing sovereign mischief and malfeasance”. While these records cannot be made public, transparent provision of records to the individual, guardians, authorized representatives, providers and support coordinators/case managers whom the individual has listed on their Consent to share confidential information form, could be given to these essential advocates and protectors of the individual who would be able to perform the critical function indicated by Justice O’Connor; why should these individuals be denied the tools necessary to perform their function to protect and serve the individuals involved? 4th – include protections and rights for individuals to assure transparency and provide checks and balances for any future changes in the process for making assignments to level 6 or 7. This will be the only way to correct the abuses that are occurring now and prevent even more egregious abuses from occurring in the future, without these protections in the regulations individuals will never be secure in their ability to assure a proper level assignment and hence their just and equitable share of resources as demonstrated by this quotation from a truly great Virginian Patrick Henry “the liberties of a people never were, nor ever will be, secure when the transactions of their rulers can be concealed from them”. Why not regulatorily require transparency in the level assignment process to secure the individuals rights?

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