Chester Kahapea, once the jubilant face of Hawaii’s statehood, now adjusts to life with ALS

posted on September 7, 2009 - 9:00pm
posted on November 1, 2005 - 9:50am
QUEST Vol. 12, No. 6
It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”). Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting...

A co-op model of care for adult children

posted on December 31, 2009 - 1:00am
QUEST Vol. 17, No. 1
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s. Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....
posted on May 1, 2006 - 4:42am
QUEST Vol. 13, No. 3
The summer before our daughter Abby’s senior year in high school, my husband and I saw to it that she had all the appropriate activities: We visited colleges, caught up on medical appointments and made sure she prepared for her SATs. Interesting, but not exactly fun.

Even in tough times, this self-directed service option is giving Medicaid consumers more flexibility and saving states money

posted on March 12, 2010 - 2:30pm
Cash and Counseling, a government program that gives Medicaid recipients in 15 states direct control over their personal-care spending, has been so successful that a majority of states are now adopting it or similar programs. A new report tells why and how.

Events, awards and campaigns are planned to recognize and raise the status of professional caregivers during Direct Support Professionals Week

posted on September 13, 2010 - 3:11pm
Do you know an outstanding professional caregiver?  This would be a good week to show some special appreciation for the important work he or she does. Spurred on by organizations that represent professional caregivers, the United States Senate has declared the week starting Sept. 12, 2010, to be the third annual National Direct Support Professionals Recognition Week. Events are planned...
posted on October 1, 2010 - 3:25pm
QUEST Vol. 17, No. 4
“There are four kinds of people: those who are caregivers, those who have been caregivers, those who will be caregivers, and those who will need a caregiver.”  ~ Rosalynn Carter While the month of November is recognized as National Family Caregivers Month, a salute to caregivers is warranted all 12 months of each year.

The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties

posted on January 1, 2011 - 1:31pm
QUEST Vol. 18, No. 1
Have you ever considered whether you eat to live or live to eat? Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.

Survey confirms importance of family caregivers to adults with muscle disease

posted on October 1, 2011 - 10:37am
QUEST Vol. 18, No. 4
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...

A new federal program provides personal care aides for individuals with disabilities stranded in emergency shelters during a declared disaster

posted on August 13, 2012 - 6:00am
Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared?  Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional...