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Inside ■ Saudi Arabian trip - pg 4 ■ Central Corridor - pg 15 ■ Dir. of Organizations - pp 7-10
H i s t o r y
N o t e
“Freedom is nothing but a chance to be better.” —Albert Camus (1913-1960)
P 2 Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766
Volume 20, Number 3
Minnesota’s Disability
Community Newspaper
April 10, 2009
Minnesotans get energized at state capitol rally an enthusiastic crowd of about parents, providers, self-advo1,000 people took to the state cates, and advocates alike— capitol steps March 7. spoke passionately about the need for the supports our state Members of Advocating provides and, just as passionChange Together and Self- ately, called for reforms to Advocates Minnesota led the make the system better and crowd in song. Other self-ad- last for the long haul. The posivocates and their supporters tive energy coming from both helped lead chants; one popu- the podium and from the crowd lar call and response started was palpable. with the question, “Who Belongs?” and was answered with As expected at a rally, there “Everyone!” Parents, provid- were also plenty of signs spread ers, advocates, self-advocates throughout the crowd commuA large crowd attended the March 7 and children all together that nicating a whole host of mesRally at the State Capitol for People with Disabilities day. People came not only sages. Many signs communiand Older Minnesotans. from the Twin Cities, but from cated similar themes about across the state—be it Zum- protecting services from budby Mike Gude brota in the South, Marshall in get cuts, and some called for tate officials must sup- nesotans and work for long- the Southwest, St. Cloud in the higher taxes to help, like “Tax port people with dis- term reforms in the service state’s middle and Eveleth in Me, Not Those Most In Need.” abilities and older Min- system. That was the message the Northeast. The speakers— Other signs urged state offi-
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cials to recognize the dignity and the contributions of those with disabilities and seniors: “Disability Matters.” “Walk in My Shoes.” “I Matter.” “Invest in Our Brother; He Pays Taxes, Too!” A few raised other issues, like the maltreatment at the Minnesota Extended Treatment Options facility: “No More METOs” and “Don’t Handcuff Me.” And at least one sign, held up by a gentleman with Down syndrome, carried an optimistic and hopeful view: “Minnesota Cares.”
Chair Linda Berglin, and Senate Minority Leader David Senjem all shared a few words of support for those attending and their thoughts on the difficult battle ahead this legislative session. Community members hope, that as the struggle continues to maintain and enhance services, that all their colleagues from both sides of the aisle took notice of this event. Didn’t get to the Capitol that day? See a collection of rally photos at www.flickr.com/ photos/arrm ■
It was also encouraging to see bipartisan support for the rally. Mike Gude works for The Arc Speaker of the House Marga- of Minnesota. ret Anderson Kelliher, Senate Health and Human Services
Two sisters’ story Red River Valley floods show need to plan ahead for emergencies by Jane McClure
B
eing a caregiver for a disabled family member can be difficult, especially for those who live far from their loved ones. Add a natural disaster to the mix and it becomes all the more challenging. The story of two sisters, Diana and Cynthia, and the Red River Valley floods, is a reminder of how everyone should plan ahead.
residents and medical patients safe. But it meant logistical and care challenges as well as stress for those being moved. Family members also felt the stress. For Cynthia, watching the flood from her home in St. Paul, the rising Red River had her worrying about Diana. Diana, who has cerebral palsy and a developmentally disability, has been a resident of Fargo’s Bethany Homes since summer 2007. Last November Diana entered hospice care at the nursing home as her fronto-temporal dementia became more acute.
Lifelong Fargo resident Diana, 61, had maintained a high level of independence for many years. “Our mother always wanted Diana mainstreamed, before that was common,” Cynthia said. “She demanded Family members have had to a lot from Diana and held her search for resources and find ways to help Diana from afar. accountable.” When Diana developed more Diana married and had her own serious health and mobility home. Her husband is also dis- problems several years ago, abled. Her parents helped them Cynthia and other family memfor as many years, as they bers increased their involvecould, and her siblings visited ment in her care. “One chaland checked in from afar. lenge we had was finding resources, to keep her in her When the Red River began to home for as long as she could rise in late March, officials in live there,” Cynthia said. Fargo, Moorhead and other river valley communities made Most services for persons with the decision to evacuate nurs- cerebral palsy center on chiling homes, assisted living fa- dren, not adults. Through cilities and hospitals. That kept Gillette Cynthia was able to
find a doctor who specializes in the health care issues faced by adults with cerebral palsy. Another search found a trust fund to help pay for a specialized wheelchair for her sister. Other resources had mixed results. Family members were pleased to find resources to renovate a bathroom for accessibility. But the work was done for a right-handed person. Diana is left-handed, so the bathroom was difficult for her to use. Strengthening the family’s network to look after Diana and her husband was a challenge. Getting people to recognize when something was wrong with her was another. “I think sometimes there is an attitude toward people with disabilities to say ‘Pull yourself together’ and ‘why can’t you do this’ when a situation changes. “I’d have to say, ‘Don’t get mad at her’ as her health issues became worse.” When the dementia was diagnosed, Cynthia had to fight to get Diana into a nursing home. Luckily, it was Bethany. “She had volunteered there for a long time before she became a resi-
dent, so everybody knew her The family and caregivers were and loved her,” Cynthia said. told Diana had been taken to the airport but nursing home Having that level of trust has staff decided she was too frail been a key for the family. “Be- to make a flight. So she was cause we have had such a good taken to a nursing home in relationship with the nursing Langdon, a small North Dahome, we have been able to kota town. trust the decisions they have made for Diana,” Cynthia said. “I was on it, but it took about That has become more impor- two days to find out where tant as Diana’s health wors- Diana had been taken,” Cynened and she lost her ability to thia said. speak. She is well aware of the logisThrough email and Web cams, tics and planning it takes to as well as regular visits, Cyn- evacuate a nursing home, hosthia has been able to stay in pital or assisted living facility. almost daily contact with her “It’s amazing, what goes into sister and caregivers. The fam- that and what has to happen to ily set up a Google group and get people moved safely, with ways to monitor Diana’s care their medicine and everything and stay in touch. Family and they need. The pictures you friends regularly send cards see in the newspapers and on and pictures, which Diana has television really don’t tell the always loved. “We have to look story.” at it as we’re a community and we’re all in her care together,” “Overall, I think things were Cynthia said. handled as well as they could have been,” Cynthia said. One Then the flood came. change Cynthia would like to see in resident care and evacu“Diana’s guardian called and ation plans is to have as many told me Bethany had been family and guardian contacts evacuated but we didn’t know on hand as possible. In Diana’s where she had been taken to,” case the nursing home didn’t Cynthia said. have the guardian’s cell phone
Cynthia enjoyed a visit with her sister Diana, a resident of Bethany Homes in Fargo. Diana was one of the residents evacuated during the recent Red River flooding. number, which delayed contact. Another idea Cynthia raises is that of having family members and other responsible parties involved in future emergencies. If possible, she would like to have had Diana put in a nursing home closer to the Twin Cities, so she could have helped with her care. On a short-term basis in emergency situations, the family members would have been a great help. “With her care, there are just a lot of little details that people may not realize until they’re attuned to her situation.” Her siblings know these little details. Sisters - cont. on p. 14