LETTER OF INTENT EMILY ANN SHANAHAN DISABILITY: CEREBRAL PALSY Emily’s disability is orthopedic only. Emily is an Honor Roll student with a very active lifestyle. Emily is an accomplished actress, author and model. Emily is active in her Youth Group at church. WRITTEN: FEBRUARY 2003/UPDATED JANUARY 2007 BY THOMAS J. AND BARBARA E. SHANAHAN WITH EMILY’S CONSENT www.home.woh.rr.com/emilys QUOTES: “The key to creativity is to begin with the end in view, with a vision and a blueprint of the desired result” Stephen Covey “Do not part with your dreams. When they are gone, you may still exist, but you have ceased to live.” Mark Twain PURPOSE STATEMENT: The Letter of Intent is not a legal document but a directive from the family. If we, Tom and Barb, become unable to care for Emily in the future, this Letter of Intent will enable Emily’s daily life and long term needs to continue with excellence. It will provide a map on how to manage Emily’s disability. As Emily matures and we, Emily’s parents, step back from being her primary caregivers, we want to create a team of advocates to take trustworthy, compassionate ownership of one or more areas of Emily’s life that are discussed in the body of this Letter of Intent. As Emily’s parents, it is our vision that a yearly summit take place by all advocates to check in with Emily to keep communication lines open. Advocates represented will be from: Family, Friends, Financial Advisors, Church, School, Medical and Governmental Programs. What is an advocate? An advocate is a person who writes or speaks in support of someone. Note: an advocate would serve for an appointed period of time, on a rotational basis or step down if needed. Our governing scriptures for the role of advocates are: Job 16:19 Even now my witness is in heaven, my advocate on high. And Isaiah 55:8-9 "For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts your thoughts." And Proverbs 15:22 Plans fail for lack of counsel, but with many advisers they succeed. Prayer and grace are key when dealing with people throughout the advocating process. Our goal is to have Emily’s needs met with joy, a personal touch and teamwork! A positive approach builds up the very people who are able to help in the advocating process. It promotes timeliness, shared resources, and creates a strong relational base. We want work together for the good of Emily. Emily’s daily life can continue with excellence as a caring team of committed advocates work together! Teamwork will keep Emily from being a product of the system. Due to Emily’s needs being so detailed, ongoing and intense at times it cannot be done by one person. The wealth of ideas and shared help a team of loving advocates bring into Emily’s life will enrich the lives of all involved, not just Emily’s!
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RELATIONSHIPS: “Life is relationships” as Pastor John Jackson frequently states in his sermons at our home church “The Gathering” where grace and people meet in Dayton, Ohio. It is our goal for Emily to have a personal relationship with God, family, and friends that is rich, deep, authentic and alive with love, patience, and compassion. CHURCH: It is important that Emily be a part of a relationally healthy and biblically based church that promotes the love of God with grace. It is important that Emily attend a weekly worship service, a small group Bible study and church-based social events. Life is meant to be shared with other people and be FUN! Emily’s Pastor and wife are: John and Mindy Jackson The Gathering Church 10501 Success Lane Centerville, OH 45458 Office: 937-886-0737 www.gatheringofgrace.org
FINANCIAL PLANNING: Emily should not have any assets totaling $1,500 or more in her name. If Emily ever does, she will lose all services and programs. Loss of these programs and services mentioned below, provide benefits in thousands of dollars on a monthly basis depending on what is going on in Emily’s life, surgery for example. Emily will always need to be a part of any financial decisions made regarding monthly living expenses, meeting her daily physical needs relating to her disability and long-term planning. Emily will need the advice of a Christian Financial Planner who can be her hands and feet to complete the financial transactions and help her make wise decisions for long-term planning, etc. Trust and accountability will be key to Emily’s financial long-term security. Once married, her husband will provide valuable input as well and be of great assistance to Emily. Regardless of Emily’s disability, sound financial advice is wise in order to be a good steward of our money that God has given to us. For financial accountability, we keep a copy of all gifts received with attached purchase receipts should anyone ever have a question as to how we handle gifts given to Emily. Currently we have our wills with: R. Scott Blackburn, Attorney with Coolidge, Wall, Womsley, Lombard Firm 33 West First Street Dayton, OH 45402 937-449-5768 X 331 Mr. Blackburn is a Special Needs Estate Planning Lawyer. He has an adult son who is disabled. Stevan Vaughan Registered Investment Advisor FCI Financial Counseling Incorporated 7811 Mad River Road Centerville, OH 45459 937-439-4595 Work Mr. Vaughan helped us get our personal finances onto the Budget Envelope System in May of 1999.
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SUPLLEMENTAL FUNDING/ COMPENSATIONAL FUNDS (WHERE SERVICES/PROGRAMS END AND DAILY NEED STILL EXISTS) Emily receives financial help from: Ingenium Insurance UniCare Medical Claims P. O. Box 4458 Chicago, IL 606080-4458 Medical: 800-333-3304 Pharmacy: 888-218-4844/BIN#610053 Group Number: 130748M001 Member ID: 414A59751 Family Home Services Program in Montgomery County Contact Name: Rhonda Norman Funds Available Annually $1,000: January 1 to December 31 1 Elizabeth Place Dayton, OH 45408-1445 937-457-2767 Bureau for Children with Medical Handicaps Case Number: 106-007495-0-99 P. O. Box 103 Columbus, OH 43216-1603 Columbus Phone: 800-755-4769 Dayton Contact Name: Rosemany Bradford, BCMH Nurse Coordinator 937-225-6459 Medicaid Waiver is renewed annually at: Department of Job and Family Services Aaron Ripberger, Case Manager 1111 South Edwin C. Moses Blvd. Dayton, OH 45422 937-225-6239
SSI or Supplemental Security Income Social Security Information: Dayton Office Federal Building 200 West Second Street Dayton, OH 45402 (937) 225-2542 800-772-1213 www.ssa.gov
Emily’s Claims Representative: Miss Shepherd 937-225-7900 X 3052 Emily began receiving monthly benefits in October 2006. As of January 1, 2007 Emily’s monthly deposit is $415.34. Emily will be on SSI through her college years only.
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SUPLLEMENTAL FUNDING CONTINUED Medicaid Case Number: 106-007495-0-99 Local Medicaid Waiver Case Manger: Carol Smith Care Star Case Management 81 A. Rhoads Center Drive Centerville, OH 45459 937-435-1161 X 4331 Office. Please leave a message and Carol will return your calls. Even though many services are listed, they are limited in their ability to completely provide for Emily’s ongoing adaptive and medical needs. It can take hours of paperwork, months of appeals and approvals to receive benefits. I call this gap in provision the “God Factor” where gifts from the hearts of people are given with complete trust that their gift will be put towards a need of Emily’s. Examples include, new wheelchair parts and tires, lift equipment, latex gloves, recreation equipment and maintenance towards her Hot Tub for Physical Therapy and Van with Lift.
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MEDICAL: After every phone call and office visit: We journal the time, date, names of people involved, medicines taken, tests done, topics discussed, actions items and plans made to carry the action items out to completion. We celebrate a completed “To Do” as a victory! We also keep separate journals on each Doctor and Medical Issue in order to keep a clear focus with the ability to communicate details clearly and promote team work. Keeping all doctors informed saves Emily from unnecessary procedures and keeps her well-being at the forefront with each doctor who deeply cares about Emily’s health and life. It is important that Emily see Dr. Allan Beebe in Columbus, Ohio (614-488-1816) every three months. Dr. Beebe is Emily’s Orthopedic Surgeon. Emily should see her pediatrician Dr. James A. Bryant every other month in Kettering, Ohio at 937-299-2339. Note: Barb keeps Dr. Bryant and Dr. Beebe abreast of all areas of Emily’s life. Both Dr. Bryant and Dr. Beebe write supporting letters at a moments notice for Emily and they like to see Emily’s whole life picture past her medical needs. Barb keeps a journal per doctor, visit and phone call. Get copies of all tests, evaluations and surgeries as they happen for your Home Medical Records. Place copies in the Home Medical Records file, located in our safe in the basement of our home. You may have to sign a release form and/or pay a fee to get a copy. This documentation keeps the “team work” going for all people involved in Emily’s life should they have questions as to Emily’s medical life and why it is affecting her school day, you can produce the report and understanding and support is put in place without question. Emily sees Dr. Robert Bloom (937-641-3020)~Eye Doctor for yearly eye exams. Emily sees Dr. Edward Jacobs, Urology (937-438-7682) for her frequent Urinary Tract Infections or UTI’s. Emily sees Dr. Martin Fitz (937-293-2225), Orthodontist on a monthly sometimes weekly basis. Emily sees Dr. Shelley Lopez (937-322-6532) on an “as needed” basis for counseling at Urban Light Resource Center, in Springfield, Ohio either in person or over the phone. Emily sees Dr. Adam Mezoff~Gastroenterologist (937-641-3090) on a yearly basis for her Reflux. Emily goes to West Carrollton Family Dental with Dr. Gampa (937-294-0468) every six months for cleaning and dental check-ups. Emily receives In Home Message Therapy by Diane Pine (937-491-8285). Diane provides FREE Massage Therapy for Emily since May of 2000.
Miami Valley Medical Equipment is where we take the Permobil 2K Chairman wheelchair for repairs. MVME also does in-home repairs. Call Rick Weddle at 937-233-3225.
Permobil’s Headquarters are located in Lebanon, TN. Contact Chuck Lee at 800-736-0925 Ext. 14 for repairs, emergencies and or needed parts. Note: Emily’s power wheelchair “The Permobil” has a lifetime of 5-8 years. Plan early: 1-2 years prior to needed wheelchair replacement by getting a physical evaluation done by a Permobil Sales representative and written quote drawn up so you know how to begin in prayer with advocating in the provision of a new wheelchair. Daily Wheelchair care: We wipe the wheelchair down with a clean cloth to keep it free from dust and food debris. Weekly, we clean the wheelchair with Armorall to keep it shining, in good operational order for parts to be dust/food free over the long term. Yearly, we replace the tires, seat cushion, side support and hip guide leather covers. We keep spare parts on hand for her headlights and blinkers as they get crushed on a regular basis.
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Emily’s current Physical Therapist is Cathy Gohrband (937-332-9084). Cathy treats Emily on a once a month basis. Cathy assists with casting yearly for new leg braces with Cascade, wheelchair seating/positioning, range of motion exercises, daily living skills and standing goals.We do not rely on public provided Physical Therapy to meet all of Emily’s PT needs. Currently, school provides Physical Therapy on a consultative basis only. The school provides great input for a typical school day. To meet Emily’s on-going health care issues with excellence and intimacy, it has to be taken on privately. School is a place for education. Private Physical Therapy is a place where time, ideas and resources are discussed and carried out to meet Emily’s health care issues. These action items are written in report form by Cathy Gohrband. These reports are then given to the school to promote team work and create a vision of Emily’s health care plan outside of the school setting. Emily has all of her prescriptions filled at Krogers (937-294-7210) at Alex-Bell and SR 741 location. My contact there is: Joy Bandura. Joy also orders Emily’s monthly supply of Huggies Supreme Care baby wipes (2 plastic boxes and 8 refill packages), 1 box of large latex gloves. Joy quarterly orders 1 case of Depends Refastenable Protective Underwear. Note: I call Joy monthly and she orders per my phone requests…it is not automatic. Barb also uses a variety of equipment and product catalogs for reference and possible ordering as Emily’s needs change every 3-6 months. Call each Fall to order new catalogs: Sammons~Preston 800-323-5547, Flaghouse 800-793-7900, Rifton 800-777-4244, Kaye Products 919-732-6444. I get Emily’s daily living aids like plates, cups, adapted cup handles, spoons and dycem from Sammons-Preston. Emily was gifted with a hot tub at our home in June of 2000. Emily takes dips on a weekly basis for relief from her tight muscle tone due to her Cerebral Palsy and relief from the Rod placed in her back due to Scoliosis. Tom built a lift over the hot tub in August of 2002. It is also our goal to keep all of her equipment in good operation, broken parts replaced, clean and equipment upgraded when a new design comes out that would make Emily’s and her caregivers’ lives easier. For example, Emily’s current stander is an Easy Stand 5000 (507-697-6393) which came out on the market in March of 2000 for $3,700. The stander has features for growth, it is user friendly; it has a tray, and it comes with wheels that work over carpeting! This was an advocating project that I took on due to the benefits of standing for Emily’s overall circulation, weight bearing for bone growth, muscle stretches, and bed sore prevention. Duraline Monthly Order (Emily’s Cotton Facilities): 800-654-3376 Note: Have order called in the last week of the month for delivery by the first of next month. Monthly Order: 920B25 (300) of Dura-Tex Pant Liners PVS-512 One case of Prevail Pull-ups Extra~Absorbent. Size medium. 1010-L Two boxes of Large Latex Gloves UP-150 One case (150) Large Bed Pads Quarterly Order: LC-012 One case of First Quality Overnight Leg Cuffs Diapers #UP-300 One case of Small Bed Pads (17.5” X 24”)
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CAREGIVERS or “DREAM TEAM” MEMBES FOR DAILY PERSONAL CARE: Emily will need help in securing and hiring a dedicated team of caregivers who will share in the daily routine of getting Emily up for the day with a shower, a balanced breakfast and getting dressed. Emily’s hygiene is of up most importance to us as her parents. We never want a person approaching Emily in public to have to get past her personal hygiene and then her wheelchair before they ever begin to take part in conversation with her and miss her inner beauty. Until Emily is able to manage her own care, it is vital to supervise the quality of her daily care. Skin break downs happen quickly: Dandruff, acne flair ups, athlete’s foot and bed sores. If Emily’s daily care notes are followed, skin break downs can be avoided altogether. It is important to keep Emily’s current daily routine typed, updated, and available to her caregivers informed so that her level of care continues with excellence. Emily’s clothing will need to be updated every season to replace worn items and accommodate clothing trends that complement Emily. Securing a team of dedicated caregivers will be a continual challenge. A caregiver’s job requires a lot work with very little pay. Perseverance with phone calls and prayer will help you find a once in a lifetime gem that becomes part of your family’s daily life. Our needs change as do theirs and a time will come when they have to move on, a time of grief will visit your heart but you have to move on in the pursuit of a new caregiver. Please refer to Emily’s “Daily Care Notes” to keep her daily routine going with excellence which are located in Emily’s Life Binder. EMILY’S DREAM TEAM WITH EXCELLENCE Mary Barr~ Non Agency Personal Care Aide Start Date: 8-2006; Home: 240-676-0056 Judi Brooks~ Non Agency Personal Care Aide Start Date: 6-6-2006; Home: 937-293-0678 Joan Kaliney~ Non Agency Personal Care Aide Start Date: 9-19-2003; Home:937-885-1637 Robyn Trimble~ Non Agency Personal Care Aide Start Date: 4-26-2006 Home: 937-433-6475 Dream Team Weekly Schedule:
Monday Monday Tuesday Tuesday Wednesday Thursday Thursday 2.00 6.00 2.00 6.00 2.00 2.00 5.50 6:00am 5:00pm 6:00am 5:00pm 6:00am 6:00am 5:30pm 8:00am 11:00pm 8:00am 11:00pm 8:00am 8:00am 11:00pm Joan Kaliney Mary Barr Robyn Trimble Mary Barr Joan Kaliney Robyn Trimble Robyn Trimble
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HOUSING: Our goal for Emily as an adult is to build a wheelchair accessible home that is a one level ranch home with a cement ramp to the basement. We have met with an architect, the cost of an accessible home is approximately $250,000 to $300,000. The doorways need to be 4 feet in width and hallways need to be 6 feet in width for turning maneuverability. Emily would like to have a library located next to her bedroom and bath. A wall-mounted therapy platform table would be great for in-home therapy treatment sessions. The house will need a Ceiling Lift system mounted in the ceilings of her bedroom, bathroom, hot tub and main living area. Install low countertops with sinks and work areas in both the kitchen and bathrooms that a wheelchair can access both in height and leg clearance. Emily will also need weekly house cleaning help with yearly hired contract help to maintain the house in good operational order. An example would be, replace worn flooring, painting walls and plumbing repair. We want Emily’s environment to be clean and nicely decorated. We currently have a Ceiling Lift System in our home at 510 Richie Drive since December 2001. Model/Make: Guldmann (www.guldmann.com) Dealer: New Visions Ed Homan~Owner 4108 State Route 118 Coldwater, OH 45828 800-617-6795 The house will have a suite with its own entrance, which will include a kitchen, bedroom with bathroom and small family room to accommodate her caregiver. Emily plans on getting married and having two children. Her husband will be able to be Emily’s “husband” with the support of an on premise caregiver at all times. Emily currently uses a Combi Shower/Commode Chair purchased in 2-2007 from Sammons Preston Catalog for $2,205. Emily sleeps on an Invacare MicroAir Turn Q-Plus Rotational Air Mattress that was purchased from Key Mobility for $11,445. Due to her Scoliosis surgery on September 11, 2001 at 9am, Emily is unable to tolerate pressure on her back and needs repositioning throughout the night. After several sleepless nights by the whole family, Tom found the answer for Emily’s comfort on the internet!
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TRANSPORTATION: Emily currently has her own full-size extended end Ford E-350 Van adapted with a Ricon Rear Lift. Ricon’s tongue of lift is also the longer length to accommodate the Permobil’s length. Our goal is to keep Emily in Private Transportation with a personally owned and adapted van with a lift, automatic wheelchair locking system (Currently Emily uses an EZ Lock), a 4-point strap lock down system as back-up, an extended top and end van cap for extra head clearance with 9” header cut out with welded rear door extensions and automatic door openers to meet her wheelchair transportation needs. Personally owned transportation affords Emily the independence and freedom of choice to attend church, school, shop, eat at her favorite restaurant and travel to the doctor. We have found that Ford Vans are easiest to install adaptive equipment in after they leave the production line. We have had great success with Eastgate Ford (937-429-1300) in the purchase of a van in Dayton, Ohio. Emily’s vans have about a 6-8 year life span due to the van’s heavy use and Emily’s active life style. Again, plan 1-2 years ahead of the anticipated need by getting quotes on paper to help get the word out to family and friends for prayer and donations. There is no formal funding available to purchase van and adaptive equipment. The van provision is totally supported by the generous hearts of loving people. Emily also carries a Mobile Phone on her at all times for a direct communication line in case of emergencies or to create much needed independence. The phone is Emily’s lifeline when out and about. Currently we deal with Forward Motions for Emily’s adaptive van needs: MC Mobility Systems, Inc. Mr. Ken Knedler 214 Valley Street Dayton, OH 45404 937-222-5001 In the future, for Emily’s adaptive equipment van needs we plan on working with: Key Mobility 2020 North Detroit Street Xenia, OH 45385 800-539-5438
www.keymobility.com
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EDUCATION: Emily will graduate from West Carrollton High School in May of 2007. Emily will begin her Freshman year at Cedarville University in August 2007!! Emily is an excellent student with a very bright mind. Emily loves the subject of History. Emily will need daily assistance while living away from home while obtaining her college degree. Daily assistance will include: showering, dressing, meals and clean-up, restroom trips and completion of daily assignments and research papers. Emily will also need adaptive equipment at college: A Ceiling Lift system, Rotational Air Bed, accessible bathroom attached to her dorm room, shower/commode chair, web casting into her dorm room for classes on inclement weather days and laptop computer with printer. Emily currently is a Freshman and Honor Roll Student at: West Carrollton High School Dr. Millie Chamberlin, Principal 5833 Student Street West Carrollton, OH 45449 937-859-5121 Transportation: Jack Hagg, Director 937-853-5121. Emily rides Bus #35. The bus arrives at the house Monday-Friday daily at 7:10 am and 3:10pm Emily’s extracurricular activities include: Fellowship of Christian Students every Friday morning at WCHS at 7:15am. Spanish Club is on Wednesday afternoons. National Honor Society on Tuesday mornings at 7:15am in the WCHS Library. EMPLOYMENT: After graduating from college, Emily plans on working full time as a Constitutional Lawyer. Emily will need an Advanced Pro Hoyer Electronic Patient Floor Lift system provision at the work place along with someone who is willing to be her work assistant~basically her hands and feet during a typical working day. This assistant will help carry out the ideas and plans that are in Emily’s mind and heart.
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RECREATION AND VACATION TRIPS: It is important that Emily have time to recreate as an individual traveling at least once a year to a destination of her choice. Weekend trips to visit family, friends, attend conferences, retreats, see a movie need to be accommodated weekly to keep a balance in Emily’s life. Emily has a few dream trips in mind: Rome and Florence Italy, Cairo and Alexandria Egypt, Jericho and Jerusalem, Israel. Emily also enjoys taking bike rides in her Duet Bike. Purchased in December 1997 for $3,200. Emily rides in the front of the bike which is also a detachable wheelchair and another person rides in the back that does the actual cycling. If you need parts, please contact the dealer directly: Frank Mobility Systems, Inc. Frank Werner~Owner PIIP-ICM Building 1003 International Drive Oakdale, PA 15071-9223 412-695-7822 Since 1999, every summer Emily spends two weeks at camp: Rich Blackburn, Development Team (765-452-5580) Spring Hill Camps P. O. Box 160 Freetown, IN 47235-0160 812-497-0008 www.springhillcamps.com Spring Hill Camp’s inclusion statement is as follows: “ Inclusion for kids with special needs. We’re committed to including campers with physical and mental challenges in the program of their choice. You will not find a separate page for these campers in this brochure or a separate line on the schedule. Campers with special requirements can register for any program of his or her choice and we will do our best to facilitate full participation with extra counselors, transportation, adaptive activities, special housing if necessary, etc.” BURIAL PLANS: Tom wishes to be cremated and have his ashes distributed over Razorback Lake in Sayner, Wisconsin. Tom spent time there camping with his family from age 6 weeks old through his early 20’s at Mel’s Woods located in Sayner, WI. Barb wants to be buried in her clown costume. Emily wants to be cremated and have her ashes placed at her Mom’s burial site. Barb wishes to be buried at South Lawn Cemetery located in South Bend, Indiana. Tom, Barb and Emily desire to be Organ Donors. RICKY: Ricky (Shih-Tzu) receives a weekly bath with mild soap and Flex cream rinse. Ricky’s bedding is washed weekly. During flea season, I use flea shampoo and Advantage flea gel medicine applied on his back for protection against fleas. Ricky’s eyes need extra care as they tear a lot. Ricky’s medical care is provided by Dr. Clouse at Twin Maples Vet Clinic 937-8665949. Ricky was born on May 17, 1998. Ricky is groomed every 6 weeks at Mop-Pets Boutique in Troy, Ohio at 937-835-5195. Ricky is kenneled at all times when we “humans” are absent from the home. Ricky has a very delicate emotional make-up and requires gentle handling and words. Ricky prefers sleeping with Emily at night on her bed. SIGNED AND DATED:
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