November 1, 2011—2011/#11—58th Issue 215-699-2139 or 800-516-8052 Fax: 215-699-5139
2275 Glenview Drive, Lansdale PA 19446-6082 [email protected] www.abin-pa.org
Greetings!
Thanks to those who are responding to our 2011 Fall Appeal—so many that we need to l print the list in December! If you haven’t responded yet, it’s never too late.
Hoping to see you in Columbia (Lancaster) for the last fall leadership event. Please share our flyer on page 6 to increase registration. This event includes HBOT for brain injury which Meleah Corner secured for her three children under the North Carolina Medicaid system under federal Medicaid law (§1396Dr5) - see page 7 for details.
The Brigitte & Javier Jeter Family with five young children are facing challenges due to the flood. Prayers are requested, and direct material assistance if possible. Javier is on the COMMCARE Waiver. See page 2.
Plans are underway for a 5th anniversary directory by county so people can connect with each other. There will be an Honor Roll, Memory Wall, and advertising opportunities. Survivors and families will be marked S and/or F with phone/email info. Please advise if you would prefer not to be listed.
Together we are making a difference!
Barb Dively
Register now - www.abin-pa.org or see
form on last page of this newsletter.
ABIN-PA EASTERN PA FALL LEADERSHIP TRAINING
UNLOCKING THE DOOR TO RECOVERY
9 am—4 pm, Saturday, November 12 Holy Trinity Parish Center, Columbia
(near Lancaster)—flyer pg.6
SPEAKERS
Jim Arnold & Deb Stumpf Disability Empowerment Center in
Lancaster
Panel of Survivors and Family Members
Louis Neureuter MD & Connie Waltz, Director, from the Lombard Hyperbaric
Oxygenation Medical Center in Columbia
Barb Dively, Director, ABIN-PA
Scholarships for Survivors with low income.
IN THIS ISSUE PAGE
1. Editor, Events, Index 2. Crossword Puzzles, Donors, Jeter Family 3. Medicaid continued, Mission, Resources 4. Improving My Life Day by Day—Lowry 5. Assistive Technology Loans, Ad Rates 6. Flyer—ABIN-PA Lancaster area11/12/2011 7. Corner Family Uses Medicaid for HBOT 8. Your Message to ABIN-PA
ABIN-PA SCHEDULE All are welcome—please join us!
Sunday Meetings: Lansdale or call-in using 218-862-1300, PC127105. Board at 2pm. Email for directions. Please RSVP for potlucks. DATES: Nov.6, *Dec.11. *4-6 pm Potluck. Newsletter Mailings: Tues.,1-3pm, Lansdale. DATES: Nov.1, Dec.6.
Several years ago, our family was affected by an automobile accident. In the ER, Javier did not know who I was, was not aware of his surroundings, and looked as if he was empty inside. After hospitalization, rehabilitation, and therapy, he was diagnosed with a permanent traumatic brain injury.
Now, I am a caregiver as well as the mother of 5 young children. I am being monitored for a brain cyst and we have 2 children with special needs. We are also victims of "Storm Lee" in September. We had over 2 ft of water in our finished basement and our storage area was destroyed. During clean up, our bills piled high and we are in great need of assistance. I also worry about the holidays for my children. If you, or anyone you know of, can donate to help our family, please contact me. Just a note of encouragement will help too! Please pray for us.
CROSSWORD PUZZLES by Brian Phillips
I think I started working on crossword puzzles when I was just recovering from my brain surgery so my days were filled with weight bearing and gaining strength so in my down time I worked crossword puzzles to keep my mind active. I can somehow still REMEMBER back to the early 80's and my taking the Campus Loop and seeing on the seat beside me of how someone completed a crossword puzzle in pen and it just looked so neat to me that I always wanted to be able to do that. Back in those days I was never brave enough to use ink pen though, since I always used a mechanical pencil to do my engineering problems. You don't need a pencil sharpener being the main reason why I went with this style of pencil plus it never got your clothes dirty whenever I put it in my pocket.
THANK YOU TO OUR DONORS
SEPTEMBER CONTRIBUTIONS Deborah Benkovitz, Marta Bivins, James/Lynn Cauley, Bob Drucker, Mylan Classic, Sheryll Poris, Kay Rowe, Pat Strenk, Gail Weingarten, Zwingli United Church of Christ. In Honor of: Samatha Custer from Aaron Severe; Michael Follmer from Andrew Follmer; Karl Soltman from Sherill De Aoun. In Memory of: Laurie Nolan from Joan Nolan; Anne Frank Olson from John/Carol Frock; Bruce Rogers from Sandy Rogers; F. Joseph Sangiacomo from Darline Primavera.
ABIN-PA’s MISSION ABIN-PA is dedicated to increasing public
awareness about acquired brain injury and to providing support, education, information, advocacy and other services for individuals with acquired brain injury and their families.
ABIN-PA NETWORK NEWS—November 1, 2011—Page 3
RESOURCES (PDO = “PA Department of”)
Brain Injury Help Line—PDO Health
1-866-412-4755 Brain Injury InfoLine—ABIN-PA
1-800-516-8052 Brain Injury Resource Line—BIAPA
1-866-635-7097 Brain STEPS—school children—BIAPA
1-724-944-6542 Client Assistance Program for OVR & CIL’s 1-888-745-2357
Consumer Protection—PA Atty. General 1-800-441-2555
Crime Victims—www.pbpp.state.pa.us 1-800-563-6399 and 1-800-233-2339
Defense & Veterans Brain Injury 1-814-255-8601
Disability Rights Network 1-800-692-7443
Domestic Violence Hotline—Nat’l 1-800-799-7233
Head Injury Program—PDO Health 1-717-772-2762
Health Law Project—Public benefits 1-800-274-3258
Managed Care—Health Insurance 1-888-466-2787 PDO Health
1-877-881-6388 PDO Insurance Parent to Parent - Mentoring
Waiver Help Line—PDO Public Welfare 1-800-757-5042
Continued from page 7 Medicaid pays for children to receive HBOT
Our attorney then filed a motion in superior court to have the judge issue a court order to enroll the facility as a Medicaid provider, so that the children could receive the treatment that the state had agreed to cover. “The State decided not to enroll the facility as a provider,” she added, “and instead issued an agreement that they would pay for the cost of the treatments for the three children, even though the facility was an enrolled Medicaid provider. The facility promptly scheduled and began the prescribed treatments for the children. The children had no adverse reactions to having to get into the hyperbaric chambers. The staff made them very comfortable with the facility. One of my children often had troubled getting his ears to pop, and the staffers were very good with slowing down compression to allow him time to adjust to the pressure changes.” The treatment brought positive change, as Corner noted. “We saw definite improvements in language skills, motor skills, eye contact, conversational ability and so on with the children,” she said. “Our neurologist is pleased with their improvements and plans to prescribe treatment again in the future to continue the improvements in the children that have begun.” [Printed at the request of Meleah Corner with permission from Thomas Lark.]
by Ford Lowry I had a real hard life growing up. My parents were divorced when I was a year old and my dad never had anything to do with me. Around the age of eight my Mom remarried. My Mom's new boyfriend was great but once he was married to my Mom, he became very mean and abusive. I hated him and everything he said and did to me. At the age of fifteen I started drinking and doing drugs. Drugs and alcohol were always there for me and never let me down. I was working two jobs, and I was only eighteen. It was all great until July 14 of 1996 at about 11:45 AM. Then my whole life changed. After two days of working and partying and going on my third day with no sleep, I was coming home from a flea market and I fell asleep 3 blocks away from my house. The car flipped and landed on my head and I suffered an open skull brain injury that still affects me today. A fireman who was my friend was one of the first ones at the scene and he told me that he thought I was dead. I had a hole in my head bigger than his fist and he could see my brain exposed to the world. I was immediately life-flighted to Presbyterian Hospital where Dr. Marion performed brain surgery to see if he could save my life. While in the hospital, I had five brain surgeries that resulted in Dr. Marion removing three pieces of my brain. Whatever my head hit pierced my skull and cut away or damaged mainly the temporal lobe area of the right side of my brain. They told me I looked like a monster while I was in a coma and they were performing brain surgeries on me. My brain would not stop swelling. The one good thing is I was still alive, although barely. The doctors told my family I would probably not live. If I did, I would be blind, deaf, and a vegetable for the rest of my life. I did eventually come out of the coma, but I was a vegetable for a while. I went through hours of occupational, speech, physical, and other therapies you have probably never even heard of. I hated myself and the thought that I was stuck in the hospital and could not leave. I would cry and often wished I would die, but I did not have the ability to kill myself. However, eventually I
was released from the hospital and I returned home to a totally different world. Once home, I realized I had no more friends. I mean, who wants to hang out with a crippled vegetable that had to be babysat all the time. I tried hard every day to do things but I was severely depressed and once again often wished I were dead. I realized early on in recovery that I was never going to do physical labor again and I felt like a worthless, useless waste of space, but my OVR counselor, Tom Repka, helped me find out that I was able to learn again and he began teaching me. I hated it for I had to be taught the alphabet, how to write, and how to talk. I thought this was such a waste of time, both mine and Tom's, but I kept at it and thank heavens I did. After years of rehab, I learned to excel at schoolwork. Also since I had no friends and no one to bother me I could spend all my time on schoolwork, so I braved the unthinkable, the impossible, and that was college. I did great at college and got exceptional grades which raised my self-esteem and brought me out of my prison cell of depression. I made the Dean's list, was accepted to the national honor society for Psychology, Psi Chi, and now I am going for a master's degree at California University in southwestern Pennsylvania. Overall, life tried to ruin me and destroy me, right up until the deep state of depression I was in after the brain injury, but I never let someone tell me I “could not” because I could. The medical field even wrote me off as useless, but I proved them all wrong and can finally look all my naysayers in the eye and say, "I did it". I feel so good for the way I single handedly took a life that was filled with sorrow, self-doubt, and overwhelming depression, and improved it day by day. With the help and inspiration of my two wonderful daughters, I graduated from college and now have a career. Even though my children's mother will never be a part of their lives, my two daughters and I are extremely happy. Though my work as a dad will never end, I take pride in the fact that I am responsible for doing what it takes to provide a clean decent home for them to grow up in safely.
Many Pennsylvania residents do not have the necessary assistive devices they need because the devices are not funded by medical insurance or other funding sources. PATF fills those funding gaps for older Pennsylvanians and Pennsylvanians with disabilities by providing low-interest loans with extended repayment terms. Adapted vehicles, home modifications, computers, iPads, and hearing aids are just some of the assistive devices the Pennsylvania Assistive Technology Foundation (PATF) helps to fund. PATF’s program features lower interest rates than a traditional bank (current rate is 4%) with extended repayment plans. PATF also provides information about other potential funding resources and consumer credit education. For devices and services costing between $100 and $1,000, PATF offers a loan with a 0% interest rate. Pennsylvanians of all ages, income levels and disabilities are eligible to apply. PATF also extends loans to family members and friends for the purchase of wheelchairs, adapted vehicles, ramps and other assistive devices. People who have fixed incomes and those who do not qualify for a loan through a traditional bank, may qualify for a PATF loan. Low monthly payments help make assistive technology more affordable. If you would like a brochure, call PATF at 888-744-1938 (toll-free voice) or check out our website at www.patf.us
2012 NEWSLETTER & WEB ADS
Reach 1,005 subscribers in your target market while supporting ABIN-PA. 2012 rates reflect a 2.5% increase since circulation rose 30.35% over the past 12 months. In addition to low per contact cost, you benefit from monthly subscriber distribution of over 300 copies and can use each issue to promote your services. You will be visible in our web archives and can add an optional homepage link (20,400 visitors). 2012 ads run from January through December 2012. Email [email protected] for a contract. JPG of ad required. Dark copy extra.
ABIN-PA NETWORK NEWS—November 1, 2011—Page 5
15 Issues
Home Page
Rate
1/4 Yes $2,511 1/4 No $974 1/8 Yes $2024 1/8 No $486
NOTE: §1396D(r)(5) in federal Medicaid law guarantees children the treatment they need. Corners find hope with new treatment [Hyperbaric Oxygen] By THOMAS LARK [email protected] When three of Meleah Corner’s children were diagnosed with autism, she didn’t know what to do. Like most parents in such situations, the Charlotte-area mother found herself searching for ways to help her kids. Then in 2006, Corner first learned of hyperbaric oxygen therapy (or HBOT) as a treatment for autism. The biomedical physician treating one of her children recommended it as a way to help improve the symptoms related to autism. “We were unable to utilize the treatment due to the high cost,” Corner said recently, adding that HBOT’s unapproved status by insurance companies, specifically regarding autism, didn’t help. She continued that in 2007, when her husband no longer had employer-provided health insurance, the children qualified for North Carolina Medicaid. “In doing Internet research on HBOT,” she said, “I stumbled across the federal EPSDT regulation requiring that state Medicaid agencies that use federal funds provide any service necessary to a child under 21 years of age, if the physician or other treating clinician deems it necessary to correct or ameliorate the child’s condition. Our paediatrician submitted the required EPSDT forms to the state Medicaid office, and the request was denied.” That denial was based on the position that HBOT for autism was experimental and investigational, as Corner explained, and that the State was not required to cover experimental or investigational services under EPSDT. “I appealed this decision in 2008,” she said, “and went through a mediation process which resulted in no settlement. The next step was to have the case heard in the administrative court. I could not find an attorney to represent me, because the attorneys in the state who take Medicaid cases did not think that the judge would rule favourably for us. I represent(ed) myself—pro se.” The case was heard in administrative court in June, 2009, and the administrative law judge ruled in the favour of the State. However, the findings of fact were not based at all on any of the evidence presented in the hearing. “I appealed the decision to the superior court,” said Corner, “and the case was heard in October, 2009. An attorney agreed to represent us in superior court after reviewing the judge’s ruling, along with listening to the entire transcript of the hearing. He realised that our physicians and therapists had all testified to the medical
evidence pointing to the medical efficacy of the treatment for the children and that the State had presented no medical evidence to support its position. “The superior court heard the arguments of both the State and our attorney,” she continued, “and they reviewed the written transcript from the administrative hearing. He (the judge) ruled in our favour, overturning the (previous) decision. The State did not appeal. They reimbursed us for our out-of-pocket expenses of treating the children.” Then in November, 2009, the Corners’ paediatric neurologist submitted the EPSDT paperwork requesting that NC Medicaid cover another set of HBOT for the children. But the State denied the request on the same basis, although it had lost in superior court and had reimbursed the family for the first set of treatments. “The attorney who represented us in superior court agreed to take our case again,” said Corner, “and we began to prepare for the case to be heard in administrative court once again. The case was heard in the spring of 2010 in administrative court. This time, the State had three expert witnesses to testify in their favour. These witnesses all stated that HBOT was not effective treatment for autism, was experimental and investigational, et cetera. Our paediatric neurologist and a physician who is an international expert in the field of hyperbaric medicine both testified on behalf of our children. “After reviewing the transcripts from the first administrative court hearing and the superior court appeal hearing,” she added, “as well as hearing testimony and reviewing all submitted evidence, the administrative law judge ruled in our favour that the prescribed treatment was necessary for my children, was covered under the federal EPSDT statute and that the State was obligated to provide this service to my children.” But once again, the State did not agree with the administrative law judge’s decision. And the Corners found themselves in superior court in December, 2010, for the superior court judge to review and rule on the case. However, this time brought good news. After reviewing all transcripts from all of the hearings, from the first in 2009 to the present, the superior court judge ruled in the family’s favour. “The State agency decided not to appeal the ruling to the North Carolina State Court of Appeals and instead chose to pay for the treatments for the children,” Corner said. “Because this treatment is not standard for autism, no facility already enrolled as a North Carolina Medicaid provider would treat the children. A facility in Huntersville agreed to become a Medicaid provider, so that the children could receive treatment. After months of the facility jumping through the hoops of Medicaid enrollment, the Medicaid office finally stopped all contact with the facility. Continued on page 3.
Event Registration Nov 12 Lancaster: ___$25 Survivor ___$25 Family ___$65 General Check #_______. I am a survivor needing a scholarship due to low income_________. __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Donation to ABIN-PA: Sending My Check #_______ for $_______. Employer Match____. In Memory Of:__________________________ Family contact person:_____________________ In Honor Of:_____________________________Reason:___________________________________ Address for Notice:_________________________________________________________Apt:____ City:______________________________State:___Zip:______Other:_________________________
Make check out to ABIN-PA and mail to: ABIN-PA, 2275 Glenview Drive, Lansdale PA 19446.
ABIN-PA is a 501(c)(3) Pennsylvania nonprofit corporation. Contributions are tax deductible. The official registration and financial information of the Acquired Brain Injury Network of Pennsylvania, Inc., may be
obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania, 1 (800) 732-0999. Registration does not imply endorsement.
