Archive for February, 2012
When I feel like I’m struggling with something, whether it’s mundane or something of a more serious nature, there’s nothing better than talking it over with a friend. There’s something about connecting with someone who listens, cares and understands that makes me feel better.
We hope you will think of our Epic family as a group of friends – who understand, care and are here to support you. Sometimes, via our blog, we like to share ideas for fun (like Morgan’s Wonderland) with our friends. Other times, we might recommend an educational seminar or tell you about a fundraiser we’re involved in to support our friends.
Today, I invite you to read an article that was written by Abbi Perets, a mother of five who lives in Houston. In her article Abby says “Blogging is probably the best thing I do for myself. Through my blog, I’ve made connections with other parents, found answers to tough questions, and gained the support I can’t always find in real life.” I hope you enjoy reading Abbi’s article “Top 10 Blogs for Parents of Kids With Special Needs” and perhaps make a new friend along the way. To read Abbi’s article click here.
(And if you missed our Facebook post about Morgan’s Wonderland, be sure to check it out: www.facebook.com/epic. Morgan’s Wonderland is an amazing place for family fun with an inspiring story behind it.)
Members of Epic’s San Antonio office are getting ready to take the plunge … or should I say “the climb”. Our ambitious San Antonio team members will be participating in the Lone Star Chapter of the Cystic Fibrosis Association’s (“CFA”) 27th Annual Tower Climb and Run on Saturday, February 25th.
To quote the CFA “this is a challenge like no other”. Yet, our “epic” climbers will face the challenge head on when they climb 58 stories to the top of San Antonio’s Tower of the Americas. After the climb, there will be food, drinks and entertainment. What a great way to spend a Saturday morning while supporting a wonderful cause. The money raised by the participants will be used to fund research and therapies for those affected by Cystic Fibrosis.
There’s still time to form your own team and register for this worthy event. For more information, click here: Tower Climb. Whether you’re climbing or cheering us on, we hope to see you there!
Our physical therapist, Caitlin McSpadden, recently had an article published in the Pediatric Physical Therapy Journal. The focus of the article was the importance of care coordination among healthcare professionals who work with special needs and medically fragile children. Parents of medically fragile children or those with special needs deserve providers who understand the importance of care coordination and are willing to do their part to relieve some of the pressure on the family. The following information should be helpful to families in choosing healthcare professionals who are committed to care coordination and in asking for their support if it is not forthcoming.
• During one of the first visits, providers should ask families about other health, education, and social services providers they are currently accessing for their child. Providers should ask for names, phone numbers, and e-mail addresses of other providers and have parents/guardians sign a release of information to avoid HIPAA, Family Educational Rights and Privacy Act, or other confidentiality violations.
• Healthcare professionals should communicate frequently with other professionals involved in the child’s care.
• Providers should be aware of community programs and services that may benefit children and their families and help connect them to those programs.
• Medical providers should help parents/guardians and other nonmedical care team members interpret medical information.
• If discharging a child from services, provider should contact other professionals involved in the child’s care to discuss discharge plans and recommendations.
• Healthcare professionals should advocate for care coordination by talking with families, coworkers, and employers about needed care coordination activities and their benefits.
• Providers (and families) should contact local, state, and national representatives to provide input on upcoming health care legislation to support the need for care coordination.
Normally, we don’t share our employees’ accomplishments via our blog. However, in this case, we’re going to make an exception! Epic’s physical therapist, Caitlin McSpadden, is enrolled in in a doctorate program. Caitlin wrote her final paper on care coordination for children with special healthcare needs. One of Caitlin’s classmates, Mari, wrote her final paper on physical therapy and care coordination. At the suggestion of their professor, the two combined their ideas and wrote an article which was published in the Pediatric Physical Therapy Journal.
Working with special needs and medically fragile children, Caitlin has seen, firsthand, how families have to constantly juggle appointments with multiple doctors, therapists, nurses, nutritionists, and other providers while caring for their families and working outside the home. Caitlin and her classmate feel that better communication among providers would result in an improved quality of care and reduce the burden of care coordination that falls on the families. Hopefully, an understanding of – and commitment to – care coordination will soon be more commonplace among healthcare providers. To see Caitlin and Mari’s tips and suggestions for improving care coordination, check out our Facebook post tomorrow.
Earlier this week, I was speaking with one of our Regional Directors and he mentioned that a client had passed away. He said that the family was doing pretty well and seemed to have a good perspective on things. As the mother of two, I cannot imagine how difficult it must be to lose a child.
We discussed the unwavering strength, joy, love, and devotion we see in our Epic families, despite the challenges they face. While each child’s condition is different, every family is dedicated to doing everything humanly possible to ensure that their child lives life to its full potential. Our parents/caregivers are committed to giving their child the best possible quality of life, with never-ending love, hope, care and comfort.
While doctors know the statistical prognosis associated with a child’s medical condition, parents know that statistics are sometimes wrong. Our families move forward, one day at a time, fighting every obstacle, while never losing hope that their child will beat the odds. While I don’t know how each child’s story will unfold, one thing I know for sure: our families are made up of parents/caregivers and children that have an amazing spirit and capacity for love and they make the world a better place each and every day. Our families find joy in the simple things, appreciate each new day and fight for those they love. That is more than some people, who are in perfect health, accomplish in a lifetime. We can all learn from our Epic families.