By Gina Macris

Four Rhode Islanders with developmental disabilities who all need nearly constant attention have had their residential funding cut by a total of about $125,000 a year.

The most recent scoring on an extensive questionnaire that is supposed to assess their support needs says they have become much more self-sufficient. Instead of having extensive needs, they now require only moderate supports, according to the results of the questionnaire, the Supports Intensity Scale, or SIS.

But Tom Kane, the CEO of the agency that runs the men’s group home, says that if he withdraws $125,000 worth of residential staff hours for these men, “someone will get hurt.”

“It’s not a position these four men should be in, nor should the agency be in this position,” Kane told state officials at a meeting of the Employment First Task Force July 12.

Professionals acknowledge that, barring a traumatic event, the needs of a person with intellectual or developmental disabilities remain relatively stable over the course of a lifetime.

Yet one chart prepared in 2015 by a healthcare consulting company under contract with the state shows the level of need changed for 47 percent of clients who had been re-assessed since the Supports Intensity Scale was introduced in 2011.

For AccessPoint RI, a private service provider, those changes have resulted in a cumulative loss of $970.000 in developmental disability funding, roughly 12 percent of the budget, Kane said.

If the tool is reliable, the score shouldn’t change dramatically,” Kane said. “Either the tool is not reliable, or you know it was all manipulated” to reduce pressure on state spending, he said.

Jane Gallivan, the interim Director of Developmental Disabilities in the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, said, “We definitely will take a hard look.”

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said she has received numerous reports that social workers conducting the SIS interviews challenge the accuracy of answers family members give to specific questions.

Or, said Mary Beth Cournoyer, a parent member of the Employment First Task Force, the interviewer does not argue with family members’ answers but merely substitutes other ones. This becomes apparent, she said, when parents review the completed assessment and see that the ratings on needs differ from the ones they had given.

Cournoyer said parents need training on what to expect from a SIS questionnaire because the answers they give could have unexpected ramifications.

For example, parents may say that their sons or daughters can dress themselves, when the reality is much more nuanced. Without someone to put away the out-of-season clothes so they are out of reach, individuals with disabilities may dress inappropriately for the weather, she said. They may be capable of dressing themselves, but may sometimes refuse to do so.

Cournoyer indicated that parents don’t realize they need to completely remove from the picture the supports they and other family members provide naturally before they say whether their sons or daughters can perform a particular task.

Jennifer Wood, the Deputy Secretary of Health and Human Services, said “no topic has come up with more regularity than the SIS. We should have some focus groups.”

Under order of the U.S. District Court, and to avoid a possible contempt hearing, BHDDH changed its SIS policy July1 –nearly two years after it first agreed to do so -to divorce the assessment of need from funding considerations.

That new language is intended to resolve a conflict of interest noted by the U.S. Department of Justice in its 2014 findings that the state’s sheltered workshops and segregated day programs violatedthe integration mandate of the Americans With Disabilities Act, The 1999 as spelled out by the 1999 Olmstead decision of the U.S. Supreme Court.

In a subsequent consent decree designed to remedy the ADA violations, the state agreed to change its SIS policy by Sept. 1, 2014.

The policy then in place said, in part: “Starting January 1, 2013 BHDDH will assign service tiers (funding allocations) based on the results of an individual SIS assessment.

A year later, the DOJ said in its findings:

“Our investigation revealed that BHDDH staff maintains primary responsibility for administering the Supports Intensity Scale, and they are also part of the agency that administers the statewide budget for developmental disability services.This is a seeming conflict of interest because the need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result.”

The DOJ referred to similar warnings from the American Association on Intellectual and Developmental Disabilities, which created the SIS.

The consent decree prohibits the SIS from being used as a funding mechanism.

The new state policy, adopted July 1, reads, in part: “All decisions involving SIS tier assignments (levels of need) and any changes to SIS tier assignments are made solely on the basis of individual support needs as indicated by the SIS assessment in a manner that is consistent with individual’s support needs, separate and apart from resource allocation considerations.”

How the change in policy will play out in practice is not yet clear.

According to a monitor’s report to the court in August, 2015, the state reported making the necessary changes in the administration of the questionnaire, including the re-training of interviewers, but complaints from parents have persisted.

The disagreements over the SIS have resulted in families filing appeals. Most appeals are granted, according to Charles Williams, who retires as Director of Developmental Disabilities July 22. Data on the number of appeals, successful or otherwise, is not readily available.

Wood and Gallivan promised members of the Employment First Task Force they would get to the bottom of the issue.

The Employment First Task Force, created by the consent decree, consists of members representing community organizations, adults who themselves have disabilities, and parents. The task force, which holds public meetings, is intended to serve as a bridge between state government and consumers and families.

The next meeting is August 12 at 2 p.m. at the Community Provider Network of Rhode Island, 110 Jefferson Blvd., Warwick.