State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services

This story was written in honor of March being Developmental Disabilities Awareness Month. For links including emails, public testimony, and other supporting documentation contact us at dawgoregon@aol.com.

From 2001 to 2005, the State of Oregon saved over 29 million dollars through nine community based "brokerages" operating to connect adults with developmental disabilities with services in the community. More than 2,000 people are still waiting for services and currently receiving nothing more than a yearly visit with a county case manager. It's important to note that these are people who have already qualified for Medicaid funded services, but have been placed on a "waiting list" because it's said that services are not available. But, instead of making services available, the legislature has chosen to use the savings to help balance the State's budget.

UNLOCK THE WAITLIST! Staley Settlement November 2001

Most of you are probably unaware of a lawsuit brought by Oregon Advocacy Center back in 2000 on behalf of five Medicaid eligible adults with developmental disabilities. Oregon Advocacy Center is the federally funded Protection and Advocacy agency charged with providing legal assistance and investigating and resolving abuse and neglect cases involving people with mental and developmental disabilities. In this case, the neglect charges were brought against then Governor Kitzhaber and the state of Oregon. How were they neglecting people with developmental disabilities? By denying equal access to Medicaid funded support services to all people with developmental disabilities who already qualified for them. According to Medicaid rules, services are supposed to be in place within 90 days of eligibility.

Immediately the governor’s lawyers got together with the lawyers at OAC to arrange a settlement. Although there was plenty of evidence of the state’s long term neglect, the lawyers decided on a settlement known as the Staley Settlement. According to the agreement, appropriate support services were to be made available to ALL adults eligible for developmental disability services by 2005.

The disability advocacy community was all over the media - from the ARC to the Oregon Council on Developmental Disabilities (OCDD), the "Unlock the Waitlist" campaign was a success! Brokerages were created with the mission statement: “Universal access to services for all!”

But, from the beginning, the state was enrolling into brokerages more people who already had been receiving state-funded services and young people straight out of high school than people who had been on the original waiting list. In retrospect, it appeared that the plan from the beginning was to transfer people to the brokerages at a lower cost and return the savings to the general fund to use elsewhere, rather than reinvesting it in services for people with developmental disabilities who were waiting. By late 2003, only 1,000 of the original 3,100 had been enrolled from the waiting list. A freeze on new enrollments was put in place.

Resettlement signed by governor September 22 2003

No one from the advocacy community including the ARC of Oregon, Oregon Council on Developmental Disabilities (OCDD), or the brokerages appeared at a hearing on Jan 14, 2004 to contest the September 22, 2003 "modification" of the agreement that extended the waitlist to 2009. By this time, the advocates had taken up the mantra of "protect what we have" rather than insisting on getting services to the 2,000 people who were still waiting. This time the media was absent, too. According to the questions and answers document prepared by DHS and posted on the ARC website, "the modification saves the State money and prevents cuts in existing services by extending the pace and timelines in which people will eventually get services."

Disability Activists Work Group (DAWG)

At the ARC's 50 year anniversary convention May 8, 2004, Mike Maley, one of the DHS employees responsible for overseeing the implementation of the brokerages, announced that 50% of the people from the waitlist were now enrolled in the brokerages. At the time, David was a Personal Agent (case manager) working at Inclusion, Inc, one of the brokerages located in Portland. He knew the truth was that of the original 3,100 on the waiting list, only 1/3 had been enrolled. On May 9, the day following this deliberate confusion of the facts regarding enrollment numbers, the Disability Activists Work Group (DAWG) was formed.

The Unified Response: Stonewalling and Silence

On May 25 DAWG attended a DHS budget Hearing where we made it clear that what was going on would not be done quietly or without protest. When David was done with his testimony calling into question the shell game that DHS was playing with the Staley budget, Gary Weeks, director of DHS at the time, stated that he couldn't argue with any of the points David had made.

On August 2, at another DHS budget hearing, Mr. Weeks gave a presentation in which he said that community based brokerage services were less expensive for the state. On August 26, DAWG sent James Toewes, director of Seniors and People with Disabilities (SPD), four specific questions identifying several "pots" of money where it appeared that millions of dollars must have already been saved -- either through individual service plan dollars that were budgeted but never used, or lower administrative and service costs from those they had transferred to the brokerages. He replied on 9/30/04, but only after some "urging" from us to Gary Weeks. His reply was that he didn't have the staff resources to answer our questions, and suggested that we contact Jim Wrigley of the Oregon Advocacy Center (OAC) or Bill Lynch, the chair of the Staley Implementation Group to get the answers.

We knew that Mr. Toewes was just stonewalling us, but we wrote to Mr. Wrigley anyway. On October 20, 2004 Jim Wrigley responded that he didn't know the answers to any of our questions about the budget. We wondered how or why the attorney for the litigants would resettle without having this kind of detail on the budget for implementing the program outlined in the agreement. (NOTE: This was a full year after the resettlement.) In any event, he wouldn't have time to look into it until after the Emergency Board meeting in November, 2004.

By January 6, 2005 we still hadn’t heard from Mr. Wrigley at OAC responding to our questions from 3 months earlier, so DAWG contacted Senator Avel Gordley asking for help in getting the answers to our questions regarding the vast savings the State has seen through the misuse of the Staley Settlement funding. On January 24, 2005, Senator Gordley wrote a pointed email to Mr. Weeks at DHS telling him to get us the numbers we had been requesting since August.

We finally received the numbers from Jim Wrigley of OAC on 2/28/05. (NOTE the confidentiality warning regarding public information.) Mr. Wrigley’s calculation was a little more than $20.5 million, which doesn’t include the savings in operating costs at the brokerages. This adds another 8.5 million in savings. It’s easy to chalk up lower operating costs if you need fewer personal agents (case managers) to handle a lower caseload due to keeping people on the waiting list. Our calculation from the information we finally received from DHS is that over 29 million of the legislatively adopted budget was saved through the brokerages and returned to the state's general fund. Note that in his email Mr. Wrigley acknowledges that this program was cut by 50%.

For almost two years, DAWG (Disability Activists Work Group) has sought to call for accountability on how and why this could happen to such a vulnerable population. We have contacted several of our legislators, but no one in the legislature has seen fit to answer any question regarding what happened to the 29 million.

As it turns out, the November Emergency Board meeting that Mr. Wrigley referred to was an opportunity for DHS to present yet another “rebalancing” of their budget, in which they shifted $14.2 million of the previously established funding from the Staley program to the general fund to be used for other programs.

On one of the last days of the 2005 legislative session on the Oregon Public Affairs Network, Senator Kurt Schrader spoke on the floor about HB 2797, which won’t allow the State to continue its practice of using the Staley savings to fund other state programs. He thanked “the Staley folks for ONCE AGAIN stepping up to the plate in light of the difficulties within the budget” and recommended that the bill be passed.

We wrote to the Staley Implementation Group (SIG) early in the morning on August 10 asking four questions related to Senator Schrader’s comment. Since the Staley Implementation Group is supposed to be the oversight committee in charge of the decision making around implementation of the settlement, we assumed they must be the “Staley folks” the senator mentioned and that they would know what he was referring to in his commendation about “stepping up.”

DAWG later received a forwarded copy of an interesting email from Kathryn Weit to the SIG members, who is the legislative liaison (paid lobbyist) for the Oregon Council on Developmental Disabilities and a Staley Implementation Group member, urging the rest of the group to stay on message and not respond directly to our questions. (NOTE that our email to SIG was also sent to the legislators, but Ms. Weit chose to take them out of the loop in her message.) It’s interesting that while the SIG is supposed to be the oversight committee, Ms. Weit is obviously educating them about something they had no knowledge of. To this date, we have not received the “unified response” she refers to. This unified response to DAWG(S) was also mentioned in the minutes of the SIG committee in September. We have requested a copy of the unified response that was discussed during the September meeting, but have so far been stonewalled on this, too.

DAWG believes that the protection and advocacy system lawyers and the Staley Implementation Group should have stepped up to insist that any savings be returned to the program to expand services to more people. This is especially true since there was a lawsuit settlement that intended just that. If a settlement is going to create a special fund for a special purpose, we have a reasonable expectation that the money in that fund will be spent for that purpose, and not be used as a slush fund to provide backup financing for other programs.

Over 2,000 people continue to wait

The Staley agreement has never been fully funded or executed in good faith according to the court order. The governor’s “principles” budget for 2005-2007 continues the trend to underfund the program. There are still over 2,000 people with a developmental disability whose civil rights are violated daily by remaining on the waitlist for Medicaid Home and Community Based Waiver Services for which they have already been found eligible. Some of these people have been waiting for more than 30 years. For too long, state policy makers, politicians and the public have ignored that which is plainly stated in the ADD Act of 2000, that "a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support ... and remain unserved or underserved."