This law will give ua ALL a chance to be independent


In a message dated 09/06/1999 1:08:33 PM Eastern Daylight Time,
[log in to unmask] writes:

<<

 An interesting post, that describes why MiCASSA is so important with
 consumer control as a part of it.

 ----- Original Message -----
 From: WADSP/Partners in Independence <[log in to unmask]>
 To: Partners In Independence <[log in to unmask]>
 Sent: Monday, September 06, 1999 9:23 AM
 Subject: PII: Disabled Couple Wants to Take Middleman out of Home Care


 Found at the Advocacy Listserve.

 -Jeff
 Washington Alliance for Direct Support Professionals
 http://www.wadsp.org

 ********************************

 Disabled couple want to take middleman out of home care They say they
 could save money, pay staff more if they controlled resources
 By Jennie Tunkieicz
 of the Milwaukee Journal Sentinel staff
 Last Updated: Sept. 4, 1999


 Waterford - Kathy Stone and Tom Kojis know they are exceptions to the
 rule.

 They are "married spiritually, but not legally," as Kojis describes it,
 and live together in a lovely house teeming outside with summer flowers
 along the village's Main St.

 He raises 12,000 seedlings in the basement each spring and runs a flower
 and vegetable business in their driveway.

 She has written a book, loves to do research on the Internet, paints and
 enjoys bowling and swimming.

 They both have spastic cerebral palsy.

 Their condition causes slurred speech, and people who haven't known them
 for long need an interpreter to understand what they are saying.
 Nonetheless, they are articulate and know what they want.
 They want to have complete control over their own care.

 It's not for the power.
 It's because they think they can reduce the overhead and pay their
 attendants more money, and, ultimately, reduce staff turnover.
 "I want to make a better life for Kathy and me and for our help," Kojis
 said.

 Kojis says it costs a total of $125,000 - a combination of Medical
 Assistance and Community Integration Program funds which come from the
 state and federal governments - to provide home care for both of them
 annually.

 The money goes to Racine County, which contracts with Society's Assets,
 a non-profit agency that serves people with disabilities like Kojis and
 Stone.

 Because Kojis and Stone are clearly able, the agency allows them to
 advertise for their attendants, interview them, do the necessary
 background checks, hire and schedule them.

 "We are doing everything, basically, except writing the paychecks," the
 46-year-old Kojis said.

 "And," said Stone, 44, "that's what our goal is to do someday."
 Kojis and Stone know that taking care of them is difficult; their severe
 disabilities make it necessary for their attendants to help them with
 all basic living tasks. What they want is for their caregivers to make a
 better living doing it.

 "We are asking to take out the middleman so the people who wipe our
 butts get what they deserve, not the people who sit on their butts,"
 Kojis said.

 While Society's Assets receives a rate of $11.50 an hour to provide
 services for Kojis and Stone, the attendants receive a little more than
 half that - $6.25 according to Kojis' figures, $7 or better according to
 the agency's figures. Either way, Kojis thinks he can do better - that
 he could take the difference and pay some of it to the caregivers.
 Kojis said his frustration over the situation turned into depression
 when he saw a sign on a fast food chain restaurant offering $7 an hour
 starting pay.

 "We are desperate for help, and yet I sat an aide down recently and
 said, 'Go get another job. You can't make it and support your little
 girl by working here.' It was a big hurt, but it's better for her,"
 Kojis said, tears welling in his eyes. "I'm just so frustrated because
 the answer seems so easy."

 But officials say the issue is much more complicated than it sounds.
 "It's up to Racine County, but when it comes right down to it, it's
 legal liability," said Bruce Nelsen, executive director of Society's
 Assets in Racine.

 Nelsen said he would not oppose the county granting the duties to Kojis
 and Stone.  "We are not going to stand in their way," Nelsen said.

 Keeping staff has been a problem for the agency in a very tight labor
 market, Nelsen said, and his agency is working to get rates increased
 for care. The medical assistance rate, for example, had been frozen for
 eight years and then was increased 1% a year for the last two years.
 Nelsen said the agency is simply not making any money; it just barely
 breaks even.

 "It's a common misconception that (the difference) between $7 and $11.50
 is profit. That's a very inaccurate perception," he said.
 Nelsen said 85% of the rate, or $9.79, goes into direct care, which
 includes benefits and wages for attendants, in-home supplies, registered
 nurse visits and supervision. The remaining amount, $1.71, goes for
 things like liability insurance, personnel management and billing for
 the federal funds.

 While Kojis and Stone do handle many of the duties that normally are the
 responsibility of the agency, Nelsen said it is because they want to do
 those things.

 "We bend over backwards and have worked with Tom and Kathy to make sure
 they are getting what they want and what they need within the bounds of
 what is legal and proper," Nelsen said.

 Nelsen said there is tremendous liability in providing home care
 services. The legal questions involve things like who is responsible if
 a client or worker is injured, he said.

 Robert Barbee, manager of adult services and long-term care support
 program for Racine County, said liability is the issue.
 "We are perfectly willing to do it if Tom can come up with someone to
 serve as the fiscal agent who meets the criteria defined by law," Barbee
 said. "He could not do it himself unless he wants to be responsible as
 the employer."

 As the employer, Kojis would have to take responsibility for social
 security taxes, workers compensation, unemployment compensation and
 related issues, Barbee said. "We will consider it if someone is able to meet
 the
 rules and
 regulations, but to this date, we haven't seen anything (to prove
 that)," Barbee said.

 Tom Hlavacek, director of the Milwaukee office of the Wisconsin
 Coalition for Advocacy, knows Kojis and Stone and thinks they should be
 given the opportunity to show they are up to the tasks.

 "They are competent individuals," Hlavacek said. "They are not under
 protective placement or guardianship. If they want to assume that risk,
 there should be nothing to prohibit that.

 "The burden of proof on whether they could do it should not be on them;
 it should be on the county," he said.

 Allowing people with disabilities to be in charge of the finances
 associated with their care is unusual, but not unique. Hlavacek said
 that as more people opted for independent community living in the 1980s
 and '90s, rather than institutional care, many counties hired agencies
 to serve as the fiscal agents. "There is the concept of the dignity of risk,
 of
 letting people try
 things," Hlavacek said. "That's an important concept for independent
 living for all of us, not just people with disabilities."

 Hlavacek said he would encourage a test period allowing Kojis and Stone
 to administer their own funds. "If they can't, they can go back to
 system and it shouldn't be that disruptive to system to let them try
 it," he said.

 When he's feeling down about the situation, Kojis said he recalls the
 words of a friend.

 "He said, 'Do you know why God put you in a wheelchair?' I was depressed
 at the time and I said, 'No.' His answer was, 'So that you won't take
 over the world - to slow you down.'

 "I can't take over the world, but maybe I can make it better for other
 people with disabilities," Kojis said. "Maybe or maybe not. We'll see."
  >>