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Report of Tier Rule Hearing Held 4/24/08
At 1 o’clock Thursday afternoon, in a room with a maximum capacity of 49, almost 75 people filled all the available seats, stood along the walls, and sat on hastily supplied chairs in a nearby hallway to hear testimony at a rule hearing on the proposed Tier system of services for persons with disabilities.
With over 50 people scheduled to speak, representatives from the Agency for Persons with Disabilities, who co-hosted the event with the Agency for Health Care Administration, set a time limit of 3 minutes for each speaker, with the testimony scheduled to end at 4:30. . But as time went by and the tales took longer and got more heart wrenching, some representatives of advocacy groups and some service providers waived their speaking time so that the self-advocates and their families could express their fears about what will happen when the Tier system takes effect on July 1.
“I don’t like it”, said one self-advocate when she began her remarks about the Tier system. Kathy explained that she has freedom now – she has a job, she has her cat and her friends, she lives in her own home and she is proud of what she has accomplished. But all that will change in a few months - for her and for all individuals who now get waiver services. “I see diverse people here,” said Kathy, "people who want to go places, have jobs, who will not be able to go places or have jobs because we will not have PCAs, we will not have companions. "Don’t just put us in a tier", she begged Jane Johnson and the other state agency representatives sitting at a table at the front of the room. “Go visit people in their homes, and see what they need."
Another self-advocate, Josh, spoke with the help of a friend, since he could not maneuver his wheel chair to the front of the room where the microphone was. “I don’t like what the state is doing,’ he said, “think twice before you take away my rights.”
Over and over, self-advocates, their families, and service providers from around the state complained that they had not known about the tiers until recently, that they were not being told what criteria would be used to place people in a particular tier, or when they would receive any definite information.
One self- provider pleaded to know soon if she would have to close her group homes. ‘If you put my residents in tiers, I will have to close several of my group homes, and that can’t be done in a month's time. And where will they go? They’ll be homeless.”
Jim , a service provider, berated APD for not having a valid assessment instrument in place. His most telling point came when he asked APD where all the individuals were supposed to go when they lost all their services. “APD says they can to ICFs, but the last time I looked, there were only 45 empty ICF beds in the state. You better get busy and start building some more,” he told the folks at the table in the front of the room.
One young woman sat in the audience and listened as her mother begged the state not to take away the one day a week of PCA services that her daughter now receives. As her mother told the silent people sitting at the table in the front of the room that they were not doing their job to protect the state's most vulnerable citizens, the young woman put her head in her hands and began to weep.
Self- advocates, their families and providers demanded of Jane Johnson information on when they would get some definite word on how and if their lives would change for the worse. They did not get any response, because Jane had stated at the beginning of the meeting that this would be a hearing, not a dialogue between the audience and the representatives of the two state agencies.
One man spoke of his concerns for his son who would be losing services, and then he made an interesting point. “I have a brother who works for the prison near where we live, and he told me the average inmate in a prison gets more money than a person with developmental disabilities.”
Sherri Ruszkowski, an employee with the ARC in Bradford County, spoke on behalf of a parent, Deborah Chapman. Ms Chapman’s son was on the waiting list for 12 years before he finally received services to allow him to function more independently. “Now, you are going to knock him back down to the FSL level - I am outraged”. We’re treading water right now, and we’re very tired.”
Self-advocate Angela said she was angry about the Tiers and was angry that she had to come to Tallahassee for the fifth time. “Why are they doing this again”, she asked? “It makes me mad.”
Several parents and providers pointed out that there will really be no saving if APD cuts services. “If you have someone who now lives in a group home and gets day training services, and you cut the day training services, you won’t save money because you’ll have to pay staff to stay with the person all day in the group home, because they can’t be left by themselves.”
John Townsend, with ARC Putnam, warned the APD and AHCA staffers that cutting back services according to the Tier system could lead to more physical and sexual abuse.
Rebecca feared that all her rights would be taken away under the tier system and she would be forced to move out of her house. Angela, another self -advocate, said according to what she was told, she would lose $15,000 worth of services under the tier system. Another young man who runs his own business stands to lose 50% of his services, and could also lose his business under the Tier system.
Martha Barrera, an attorney with the Advocacy Center for Persons with Disabilities, stated that the tier rules have language not in statute, and that the rules contravene the legislative mandate. “We don’t understand the criteria used to assign people to tiers,” said Barrera, "but my clients will be in Tier 1 or they will file for an administrative hearing. “