U.S. disability rights activists (ADAPT) win support from Governors for Medicaid reform, 2002-2005

On July 14, 2002, members of ADAPT (formerly Americans Disabled for Accessible Public Transit) blocked in five governors’ courtesy SUVs and harassed participants at the National Governors Association (NGA) Conference in downtown Boise, Idaho, in an attempt to gain support for the Medicaid Community Attendant Services and Supports Act, or MiCASSA. ADAPT developed MiCASSA with the intention to help people with disabilities on Medicaid choose whether to spend their support services money on nursing homes or on personal care attendants. This marked the first major action in ADAPT’s campaign to force the NGA to support Medicaid reform.

ADAPT’s long-term care resolution recognized the institutional bias of the current Medicaid system. It resolved to fully include people with disabilities; supported the passage of MiCASSA, and the Money Follows the Person legislation; demanded the implementation of the 1999 Olmstead decision; and opposed block grant funding of Medicaid, which would result in more older and disabled people being kept in or forced into nursing homes and other institutional settings. Block grant funding would also allow the misuse of 1115 waivers, which allowed states to “experiment, pilot or demonstrate projects which were likely to assist in promoting the objectives of the Medicaid statute.”

The Medicaid bias, which was an issue since the conception of Medicaid in the 1970’s, was no longer legally acceptable since the 1990 Americans with Disabilities Act and the 1999 Olmstead decision, both of which affirmed disabled citizens’ right to inclusion in the community rather than confinement in long-term institutions. However, the for-profit nursing home industry had a stronghold on the exclusive federal guarantee of Medicaid funds. More desirable and cost-effective home and community-based services, therefore, were neglected due to the threat they posed to the nursing home industry.

Although ADAPT and the NGA had similar goals of community inclusion and economic responsibility, the nursing home lobby was able to control long-term care funding due to the Medicaid bias towards facilities over people. ADAPT wanted state governors to take responsibility for their disabled citizens and defend their right to live freely in their own homes. The NGA had previously made statements of support for community-based care, but community-based services continued being cut first, even though they were far less expensive than institution-based care.

The disability rights activists organized the action in Boise well in advance, coordinating their participants to arrive at the Idaho capitol building at exactly 10 o’clock on the first morning of the conference. The activists, the majority of whom were wheelchair-bound, “took over” several of the SUVs parked outside the Capitol that had specialty license plates beginning with the letters “NGA,” designating them as the ones being used by various governors in attendance at the conference.

The Boise police were unable to respond quickly enough to prevent the well-organized protesters of ADAPT from arriving at their intended positions of nonviolent obstruction, and so the police decided to close the road on which the captured SUVs, along with the many wheelchairs, were parked. This action greatly affected the governors’ abilities to travel around Boise to the other conference venues, causing a great and very visible inconvenience for the opposition, as Boise is not a pedestrian-friendly city, and it was 100 degrees Fahrenheit that day.

The Health and Human Resources Committee Legislative Director for the NGA, Matt Salo, had previously agreed to meet with ADAPT at 11:00 in the morning, and so was forced to meet with the ADAPT protesters in the middle of the closed street on which they were demonstrating, because holding the meeting elsewhere would require ADAPT to release the SUVs that they were obstructing.

During the meeting with Salo, it quickly became clear that he was not familiar with Medicaid and Health Care Policy and was not adequately prepared to be the spokesperson for NGA on these matters. ADAPT then began to demand a short meeting with the governors at the conference, along with placement on the following NGA conference’s agenda. Salo responded that he could not help them, claiming that only Susan Dotchin could make those decisions, but Salo refused ADAPT leader Roxane Perez’s request to give out Dotchin’s contact information, or to allow just one of the protesters to assist him with calling someone who could address their demands.

ADAPT then left the Capitol, led by Perez, for the hotel at which the governors were staying. Once there, the group blatantly ignored the curb-ramp pathway that they had been instructed to use by the police, to which Sergeant R.L. Furman responded by threatening to have them arrested if they violated any more city rules.

It was then discovered that Sergeant Furman also happened to know Susan Dotchin, and he agreed to call her and see what they would be willing to get done that afternoon. However, Lieutenant Jim Kerns negated the agreement with Furman, stating that ADAPT would not be able to meet with Dotchin or anyone else from NGA that afternoon. ADAPT then abandoned the action, marching “loud and proud” back past the police barriers, making sure to let the governors know that they should be expecting similar actions in the future.

The next year’s NGA meeting was held in Indianapolis on the weekend of August 15-17, and ADAPT was again ready with an action. The government had taken extensive precautions to ensure that no protesters would gain access to the hotel at which the NGA meeting was being held, but had not prevented anyone who might be a protester from reserving rooms at the hotel in advance. The sidewalks and roads around the hotel were barricaded for two blocks in any direction, but the police officers guarding the entrances couldn’t deny access to people who provided official identification and were subsequently verified via the hotel computer system as being guests of the hotel. Under the leadership of Teresa Torres, twenty-five members of the Indiana ADAPT team had reserved a block of 11 rooms for the weekend, and 50 additional members were in other hotels in the area or lived close enough to commute in for the day.

Roland W. Sykes, one of the leaders of the campaign, was the first to indirectly alert the opposition to the fact that they were being tricked when he drove onto hotel grounds Friday evening after getting through the police barricade by proving that he had a room at the hotel and the police saw his custom-made ADAPT logo spare tire cover on the back of his van. At that point, the opposition realized that they were going to have an issue.

Roxane Perez and Toby Tyler, two more of the leading ADAPT members and the very successful “media team,” had arrived before Sykes, had not revealed that they were members of ADAPT, and were communicating with the other members of the team about the situation inside the hotel. Shortly after Sykes, Kathleen Kleinmann and Mary Childs, two more members of the leadership team, arrived and helped Sykes prepare the radio equipment and get organized for the campaign. The rest of the team was not scheduled to arrive until Saturday evening.

All 75 members of the campaign team met on Saturday evening for a planning meeting at another hotel 2 blocks away from where the governors were staying. They planned to try and get the entire team into the governors’ hotel on Sunday morning under the guise of having guests to the hotel for brunch, and then to present the NGA with their demands of having a meeting with the Executive Committee immediately. They also organized back-up plans, but didn’t end up needing to resort to them at all.

On Sunday morning, August 17, the 25 ADAPT members with rooms at the NGA hotel met in the lobby to wait for their brunch guests. The other 50 members of the team arrived at the hotel in small groups of two or three. The guards were forced to let them through when they were identified as being guests of paying guests of the hotel, and all 75 members of the team were successfully able to enter the hotel.

Once all of the ADAPT members were inside of the building, they got out their signs and started chanting. The NGA meetings, which were being held on the second and third floors, were disrupted, as were the media interviews being held with the governors. The noise from ADAPT was so loud, in fact, that even CSPAN was forced to stop their live coverage of the NGA event.

Shona Eakin and Steve Verridan, the ADAPT negotiation leaders, turned down a meeting that the NGA offered with the chiefs of staff of a few of the governors, demanding a meeting with the NGA Executive Committee instead. The Executive Committee of the NGA continued to refuse to meet with the members of ADAPT for five hours, at which point the team moved on to their next action.

ADAPT had found out that the governors would be boarding a charter bus at 2:00 to go to a 4:00 Sunday evening dinner at the zoo. ADAPT positioned themselves at all of the exits from which the bus would have been able to leave, which prevented the NGA from boarding the bus at all in the interest of avoiding a hostage situation for the governors. They had the bus leave without the governors, at which point the ADAPT members spread out to cover a 3-block radius around the hotel, all armed with walkie-talkies, in order to make sure that the NGA didn’t try to get the bus back or exit the building.

By 4:00 on Sunday, most of the media was gone and ADAPT decided that they had delivered their message to the governors and to the public. They met back at a different hotel in order to debrief. On Monday morning, August 18th, all of the team members were escorted to the airport, state line, or their in-state location by police and other security personnel.

For the next NGA conference, over five hundred Americans Disabled for Attendant Programs Today (ADAPT) members from various locations throughout the U.S. gathered in Seattle from July 17-21, 2004.

On July 17, ADAPT members gathered at the Red Lion Inn in downtown Seattle, where most of the protesters were staying, and marched to Victor Steinbrueck Park, where they began the weekend’s actions with a rally that included the announcement of the ten worst states for home and community-based long-term care options, as well as speeches from a number of ADAPT members about their experiences with community- and/or institution-based long-term care. The rally also included a ceremonial spreading of the ashes of two former ADAPT members.

On July 18, the ADAPT protesters marched through downtown Seattle to the Westin Hotel, where the NGA meeting was taking place. The activists then invaded and occupied several of the busy downtown intersections surrounding the hotel, severely disrupting the flow of traffic. They created “chalk billboards” on the street and chanted their demands for the NGA to hear their resolution. Seattle made several attempts at getting the crowd to disperse, at one point trying to convince the protesters that the ADAPT leaders had said for everyone to move, but ADAPT did not give in, and instead raised the volume of their chants.

The police then threatened arrests, at which point Governor Rendell of Pennsylvania came out to speak with the activists. Rendell gladly agreed to introduce ADAPT’s resolution on the floor at the NGA plenary session, and even committed to campaigning for their cause within the NGA by trying to convince all of the delegations to vote for the resolution. The resolution did not go to vote in Seattle, but an edited version of it was passed in March of 2005 at the NGA’s following meeting in Washington, D.C.

At this winter meeting in Washington D.C., ADAPT again put pressure on the NGA. On February 27, 2005, ADAPT activists marched and delivered a huge copy of the Medicaid Reform Resolution that NGA would be voting on to the Governors’ hotel. The NGA finally passed the resolution, although not with all of ADAPT’s demands, by March 2.

Despite the ADAPT’s success in gaining the support of the NGA, MiCASSA (now in the form of the Community Choice Act) has still not been passed at the time of this writing in January 2012.