five years at a time - lifecare innovations · five years at a time ... gracie, profoundly...

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Five Years at a Time

A Special Needs Case Study Gracie, profoundly developmentally delayed with spastic quadriplegia, cerebral palsy and a seizure disorder, was nineteen years old when Lifecare Innovations was first contacted to provide for a five year plan detailing her care and expenses. Gracie had outgrown her initial life care plan, completed by another third party source, given its general language and application. Since the initial plan had been developed, many major life changes had occurred in Gracie’s life. Her parents had gotten legally separated and were also separated from one another by distance as they lived in separate homes, dividing up care and responsibilities for Gracie and doing so with less than desirable communications. Gracie’s condition had progressed with a seizure disorder and scoliosis being added to her diagnostic list requiring advanced treatment. The landscape of disability had changed. The twenty first century economy forced once available and much needed programming to limit or deny resources. Conversely, new developments in technology and treatment in the twenty first century have provided greater advantages, along with greater costs. Finally, Gracie is approaching the end of her school aged programming in the public school sector which calls for further and more specific refining of both public and private resources. Used in the probate court, the five year plan created by Lifecare Innovations benefitted parties in threefold: 1) outlining, for Gracie’s parents who are legally separated, the most likely care needs and expenses of their daughter and doing so in manageable chunks of five years; 2) assisting the Guardian of Estate to make the most of trust monies by investing them in ways that maximize Gracie’s investments while also allowing for their ease of liquidity when needed; 3) informing the probate court of the status of the ward, her needs and recommended care and care expenditures in order that they be able to provide for legal oversight of the guardian and ward alike. One year later, the probate court continues to use the plan as a guide to map Gracie’s care and expectations of her Guardian of Person and Estate. © L i f e c a r e I n n o v a t i o n s , I n c .

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Life Care Plan

March 2007

Gracie Smith

Prepared by: Lifecare Innovations, Inc.

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© Lifecare Innovations, Inc.

Synopsis: Gracie is a 19 year old young lady who suffers from developmental disabilities and resides in her own home with her mother and siblings in the town of Wilmington, Illinois. Gracie’s disabilities are a result of medical mismanagement by hospital staff when she was a newborn, that later resulted in a lawsuit and settlement. Gracie is profoundly disabled, and though she has an average life expectancy, her development was severely affected so that she functions at a level similar to that of an infant or toddler. Lifecare Innovations was contacted and hired by Gracie’s guardian of estate, the Trust Company, to update Gracie’s Life Care Plan and address the following specific issues:

Obtain currently pursued, recommended, and anticipated care and treatment data and associated up-to-date costs as means of updating prior plan from 1993

Assess and report on the mother’s/guardian of person’s request for a house addition to meet Gracie’s care needs, as a move is planned to a new home in a new county

Assess and report on accessibility and equipment issues at both the mother’s existing home and at the father’s separate home

Document comparison data for the cost of home care being provided vs. the comparable costs for care outside the home (i.e., institutional residential care)

Offer recommendations that may benefit the guardian’s ability to maximize Gracie’s ongoing quality of life

The 1993 Life Care Plan was written by Flanigan and Associates Ltd. when Gracie was six years old. This plan outlined goals of maximizing communication, functional abilities, mobility, self care, and language/cognitive skills, while preventing problems related to skin breakdown, nutrition, contractures, and pneumonia. These goals were broad and appropriate at the time since Gracie had not yet completed her age-related development. At this time, Gracie has completed most age-related changes and has also most likely achieved the greatest level of functional abilities that can be expected. Gracie is also now ready to enter her final year of school, so planning and programming will need to be in place for what Gracie will do when school concludes. The focus of this current Life Care Plan will be to provide data that will be accurate and complete for the upcoming five years, with anticipation of an update to the plan being made at that time. Information contained herein was obtained from in-person interviews with Gracie’s family, review of available records, correspondence with Gracie’s physicians, and published data regarding available disability and planning services. The objectives of this 2007 Life Care Plan is to:

Identify and document Gracie’s current medical, physical, and psychosocial status Highlight where changes are appropriate to properly address ongoing needs Offer information that either delineates or assists the guardian of estate to delineate costs

and expenses related to several domains of Gracie’s care including: o Medical and medical related; includes provider costs, procedure costs, possible

hospitalization costs; medication costs o Assistive technology and equipment o Attendant care o Post-secondary services o Housing

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Legal: The Trust Company is the plenary guardian of estate. Gracie’s mother, Gina Smith, is the guardian of person. Gracie’s mother and father Gina and Scott are divorced. They have joint custody of their two minor children, Kyle and Justin. Gracie Sr. has visitation with Gracie every other weekend, and Mr. and Mrs. Smith report that this is per court order. Medical Issues: Gracie is diagnosed with spastic quadriparesis type cerebral palsy, a seizure disorder of the partial type, profound mental retardation, and scoliosis. Gracie’s type of cerebral palsy affects her arms, legs, and trunk and causes her to be unable to walk, unable to stand, and unable to sit unsupported. Gracie’s scoliosis is a result of the muscle problems created by the cerebral palsy. The cerebral palsy also renders Gracie unable to speak and not able to control her bowel or bladder functions. Gracie’s seizure disorder is well controlled with medication at this time, as she has not had a seizure for approximately seven years. When Gracie was younger and her seizure control had not been achieved, she was hospitalized numerous times, often twice in one year, for seizure management. The impact of Gracie’s cerebral palsy diagnosis is best understood by considering her functional abilities at a level of an eighteen month old child, and understanding that her functional level is not expected to change over time. Gracie’s seizure disorder is well controlled by medication so that she has had no seizures in approximately eight years. Gracie’s condition renders her vulnerable to additional medical complications, though her overall health at this time is good. Gracie is at risk for contractures of her arms and legs due to her stiffness and spasticity; she is at risk for orthopedic problems with her bones and joints due to muscular imbalance, and she is at risk of skin breakdown due to her limited mobility and incontinence. While the risk for these complications can be minimized by following prescribed protocols, medical complications will always be a possibility for Gracie throughout her lifetime. The 1993 Life Care Plan included numerous hospital stay cost projections that could have resulted from medical complications. Gracie has avoided most of the projected possible complications, and given her current status it is unlikely that she will succumb to these complications in the near future, though they remain a possibility. The one complication of her condition that Gracie has been affected by is that of scoliosis, a spinal deformity that presents as a sideways curvature in her spine. Gracie’s scoliosis may be stabilized now that she has concluded her major growth spurts. There is a chance however that it may continue to progress, so it will benefit from monitoring. Scoliosis surgery is an available option that Gracie’s mother may consider for her in the future, based upon whether or not the condition progresses and whether or not it is perceived to cause her discomfort. Many times scoliosis does cause discomfort or pain. The surgery to address scoliosis is very invasive and frequently involves spinal fusion. Gracie’s mother will benefit from consulting qualified medical professionals on a regular basis to evaluate whether or not the condition progresses as well as the benefits and risks of any available treatments. The most recent known scoliosis evaluation was done by Dr. Ibrahim, Gracie’s orthopedic doctor, in 2004. The primary ongoing focus for Gracie’s medical issues is that of proper management and overall health maintenance. Proper management is accomplished via attendant care and supervision, physical therapy support and interventions, medical monitoring and follow up, proper diet, and

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use of assistive technology. Attendant care, physical therapy, and assistive technology issues will each be addressed separately later in this report. Current Medical Providers: Gracie is not covered by medical insurance and pays privately for her medical care. She does not currently have a “general medicine” internist physician, and she has not required this as her overall health has been good, and her primary medical needs have been followed by the specialists as outlined here. Gracie’s mother is in agreement with seeking a general medicine/internal medicine/family practice primary care doctor that can routinely follow Gracie for general health maintenance issues. Gracie’s Neurologist, Dr. Egel, recommended that the family seek referral to a primary care doctor through United Cerebral Palsy, the organization that operates the school that Gracie currently attends. Details of the providers Gracie currently sees include:

Neurologist: She is routinely followed by a pediatric neurologist, Dr. Robert T. Egel, M.D. Dr. Egel is affiliated with Advocate Christ Medical Center, where Gracie has received the majority of her medical care to date. Dr. Egel has served as Gracie’s primary medical provider. Dr. Egel recommends that Gracie see her for twice per year neurological examination office visits. Though Dr. Egel is a pediatric neurologist, the nature of Gracie’s disability is such that Dr. Egel has indicated that she will continue to be Gracie’s treating physician for the foreseeable future, though she has exceeded childhood age. Dr. Egel assesses Gracie’s muscular spasticity, seizure disorder, functioning and behavior, as well as her response to the prescribed medications. Routine laboratory blood work is ordered by Dr. Egel twice yearly to ensure that the prescribed medications are not producing adverse side effects. Gracie was most recently seen by Dr. Egel September 12, 2006.

Orthopedist: Gracie is also followed by an orthopedic specialist, Dr. Kamal Ibrahim, M.D. Dr. Ibrahim is a pediatric orthopedic specialist who has performed two surgeries for Gracie in the past. When Gracie was about four or five years old she had a surgical tendon release in her groin to prevent contractures to her legs. Later when she was about nine or ten years old Dr. Ibrahim did a tendon release surgery for Gracie’s hamstring muscles in her legs. As each person with Gracie’s type of disability progresses differently, it cannot be projected for certain whether or not Gracie may need another similar contracture release surgery in the future. Dr. Ibrahim has also evaluated the progression of Gracie’s scoliosis in her spine, and has informed the family of the surgical option for this, which was not pursued. Gracie was most recently seen by Dr. Ibrahim on August 3, 2004, when he recommended scoliosis surgery. Family indicates that Dr. Ibrahim may not continue to follow Gracie but may refer them to an adult orthopedist now due to Gracie’s age. Gracie has orthopedic related needs, in that she currently wears custom made orthotics on her legs to stabilize them and assist in prevention of further contractures. When Gracie was younger she wore orthotics on her arms and hands in addition to the orthotics on her legs. The essential pieces of personal medical equipment are routinely evaluated and adjustments/ new orthotics are made as needed through the coordinated efforts of the United Cerebral Palsy School staff and their contracted providers, thus alleviating the need for Gracie to have orthopedic office visits to address orthotic issues.

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Ophthalmologist: Gracie has been seen in the past by an ophthalmologist for her vision care and has prescription glasses. She was last seen by Dr. Dianne Ross in her New Lennox, Illinois office approximately six years ago. Gracie has not been seen by the ophthalmologist in recent years, as there is little perceived benefit to these services. Gracie’s vision is unable to be conventionally tested due to her inability to verbalize what she sees. Although she has prescription glasses, she does not like to wear them and makes every effort to get them off whenever they are put on. Gracie presents with “crooked” focusing eyes, thus spurring the recommendation in the 1993 plan for strabismus surgery, which would cosmetically correct this problem. Gracie’s mother is aware however that the surgery would not likely improve Gracie’s vision and would be purely cosmetic. Because the cosmetic defect is relatively minor, and because there is discomfort and risk associated with the surgery, Gracie’s mother has chosen not to pursue it. Without the benefit of visual acuity testing and without the pursuit of strabismus surgery, there is no compelling reason for Gracie to be followed intensively by an ophthalmologist. However, her mother indicates that in the instance that new data would reveal a potential benefit to Gracie’s vision from pursuit of the surgery, she would then reconsider the procedure. Gracie should therefore be seen at least once every three years by an ophthalmologist to screen for eye diseases or the emergence of new problems.

Dentist: Dental care for Gracie is routinely obtained, as she has a tendency toward oral health issues due to her prescription medications. Gracie is prone both to tartar build up and to gum soreness, and she receives professional dental cleaning services approximately every three months by Dr. Patrick Yerkes, D.D.S., whose office is in Wilmington, Illinois. Gracie was last seen by Dr. Yerkes in September 2006 and is due for a visit currently.

Physiatry and Physical Therapy: Physical medicine and rehabilitation (PM&R) care was given considerable attention in the 1993 Life Care Plan, which is appropriate since the physical therapy modality that is part of this medical area, is important for Gracie in maintaining the physical mobility she has. Physical medicine and rehabilitation care to date for Gracie has taken place through the United Cerebral Palsy School that she attends. While the school does not provide physician services of a physiatrist per se, they do provide speech therapy, occupational therapy, and physical therapy services, including orthotic management, which are appropriate to meet Gracie’s needs. Physical therapy services work primarily with Gracie’s legs, feet, and trunk mobility issues; occupational therapy works primarily with Gracie’s arms and hand mobility; speech therapy assists Gracie in her efforts to communicate and additionally monitors oral related issues such as swallowing efficacy. As noted, the physical therapist also participates in orthotic monitoring and helps to procure new orthotics as appropriate to Gracie’s growth and physical changes. The therapist also interacts with seating and positioning specialists and custom mobility specialists who recommend, custom fit, and provide the wheelchairs that Gracie uses on a daily basis. At the conclusion of school it remains to be determined what adult program Gracie will enter and whether or not PM&R modalities will be available through the program. If such services are not directly available, it will be advisable for Gracie to have these sought privately. Physical medicine and rehabilitation practices serve not only to provide the direct therapy services of physical therapy (PT), occupational therapy (OT), and speech therapy (ST), but also to coordinate the related services, such as those related to the orthotics and wheelchair, and as well

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as to provide teaching and support to those providing direct care. PT, OT and ST practitioners are at the forefront of developments in assistive technology and practical support for persons with neuromuscular disabilities; these resources will be routinely valuable to Gracie’s parents and care providers. Medications: Gracie pays privately for her medications, which are currently obtained at the Walmart Pharmacy. There are no issues with medication compliance, as Gracie’s mother places the pills into Gracie’s food, and she swallows them without incident. Gracie is currently prescribed: Medication Dosage Frequency Purpose Depakote 500 mg three times daily seizure control Carbatrol 300 mg twice daily seizure control Clonazapam 2 mg three times daily behavior and

spasticity reduction Nutritional Issues: Gracie is able to eat a normal diet and is an appropriate weight for her age and height, at approximately 115 pounds and 5’ tall. Physical Status: Gracie appears somewhat younger than her stated age and presents with apparent significant physical handicaps. She requires the assistance of others and the assistance of specialized equipment/assistive technology due to her physical limitations. She is unable to participate in any of her care related tasks and is totally dependent upon her mother and/or other care providers for her Activities of Daily Living (ADL’s) and Instrumental Activities of Daily Living (IADL’s) as follows: Activities of Daily Living:

Bathing: Gracie is bathed by her mother using a hoyer lift to transfer her onto a bathing table (which is also referred to by equipment vendors as a “shower gurney”). The bathroom currently used for Gracie’s bathing was specifically designed and built to accommodate the wheelchair, lift, and table, and to allow room for the care provider to maneuver.

Dressing and Grooming: Gracie is dressed and groomed by her mother or care provider; she is positioned either on her bed, on the shower gurney, or on the carpeted floor and turned, positioned, and clothed by the care provider.

Toileting and Incontinence: Gracie is incontinent of bladder and bowels, and incontinent products are used to manage these issues. Her mother orders a monthly supply of briefs, pads, and wipes and sends these with Gracie when she goes to school and to visit at her father’s home.

Bed mobility: Gracie is able to turn herself and roll in her bed, and she is able to pull her body some using her upper body strength. Side rails are used on the bed to ensure that she will not roll out or fall out of the bed.

Transfers: Gracie is dependent upon assistance to get in and out of her wheelchair, in and out of her bed, and up and down from a laying position.

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Ambulation/mobility: Gracie is unable to walk or stand unsupported. Strength and endurance: Gracie’s strength is average for her disability status. Her

adequate strength is not functional in nature due to her problems with muscle control, balance and coordination. Gracie receives physical and occupational therapy services at her school to maintain and enhance her physical functioning.

Equipment/services Used and Recommended (to manage ADLs): Gracie’s parents and her care providers at home and at school use several items of assistive technology and specialized equipment to manage Gracie’s care needs. When Gracie is at school she spends the majority of her time in her specialized wheelchair. She is transferred from the chair with a hoyer lift at school for activities such as physical therapy. Gracie has two wheelchairs, one custom seating system that she spends her school day in and one “stroller chair” that she uses at home, primarily for being moved from room to room. When Gracie is at home she spends some of her recreation time in her wheelchairs, though she especially enjoys spending time on a soft carpeted floor where she can stretch out. Gracie will lie on the floor, maneuver her body with her arm strength, lift her head and torso up slightly, and interact with sensory stimulation activities or with her family members. In her mother’s home she has a room outside of her bedroom for this purpose, which is her “therapy room.” When Gina completes the upcoming move her goal includes replicating this space at the new home. At her father’s home Gracie has a standard sized bedroom with soft carpeting. There are areas identified by both parents and by Lifecare Innovations where changes and improvements to equipment can be made for Gracie’s benefit. Lifecare Innovations has introduced the parents to an assistive technology/mobility specialist company, A to Z mobility, that has assessed and reported on these issues. The following summarizes what is in place, as well as recommendations for improvement as appropriate. The recommendations will be recapped at the conclusion of this document for easy reference. Also, A to Z Mobility is submitting written proposals to the guardian for the recommended items listed here: Of Gracie’s two wheelchairs, the stroller chair is new in the last year and the custom

chair is estimated at four to five years old. There are no observed deficiencies in the chairs but it is recommended that they be re-evaluated within the next two years, upon the transition from school to an adult program, and upgraded/replaced based upon physician and physical therapist recommendations. The initial 1993 plan had allocated funds for replacement of one chair every four years. Current replacement frequency is not expected to exceed once every five years. Annual maintenance for both chairs is appropriate to maintain safety and function.

Currently the hoyer lift system, a portable device, is used for taking Gracie in and out of bed, on and off of the bathing table, and sometimes on and off the floor; it is recommended that this system be upgraded to increase efficiency and safety. A track system is recommended as an appropriate primary mobility aid in the home.

o An overhead track system with a sling can be positioned on the ceiling over Gracie’s bed, shower, and recreation areas. This will increase ease of work for the person doing the transfers and will decrease the discomfort and safety issues caused for Gracie when the hoyer lift arm swings freely.

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o Both Gracie’s mother’s home and father’s home will benefit from track systems over Gracie’s bed, bathing area, and recreation area.

o The initial 1993 plan had recommended hoyer lifts for mobility, as these were industry standard at that time. There have been advancements in this area with household tracking systems that provide ease in transfer while in the household.

The hoyer lift system currently in Mrs. Smith’s house is in excess of ten years old; an upgraded hoyer lift system will provide greater safety and can be used for moving Gracie in areas where there is no track system overhead. Mr. Smith’s home will likewise benefit from a hoyer lift system. The initial 1993 plan had included replacement of the hoyer lift in the projected costs.

Mrs. Smith currently uses a shower gurney that is in excess of ten years old and has reached the end of its usable life. Mr. Smith currently bathes Gracie by lifting her into her standard bathtub. Both Mr. and Mrs. Smith will benefit from new shower gurney systems that will provide greater safety and comfort for Gracie. The 1993 plan has included a “shower chair,” which was not a functional option as Gracie grew.

Gracie and her care providers will benefit from having fully electric beds in both homes; neither parent has these in place at this time. Appropriate side-rail design for safety will be imperative in the system chosen and will impact the cost of the units. The 1993 plan had allocated costs to one bed per lifetime. It is anticipated that the basic bed units and mattresses will last in excess of ten years.

Gracie benefits from use of a “stander” at school; this piece of equipment holds her upright and is used for doing physical therapy exercises. Gracie will benefit from having a stander at her primary residence for use by her primary caregiver and as well by visiting home therapists if such are used in the future. This piece of equipment was recommended in the 1993 plan but has not been obtained for the home to date.

Gracie is placed on a mat table for physical therapy at school; she would benefit from a mat table being available at her primary residence. A portable mat table will be of the greatest benefit to conserve floor space and for the event that the table needed to be taken to a second location in or outside of the home. This piece of equipment was recommended in the 1993 plan but has not been obtained for the home to date.

Wheelchair ramps for both homes are appropriate and necessary. Currently Gracie’s primary home with her mother is accessible, but her father’s home has stairs that require Mr. Smith to carry Gracie into the house separately from her chair.

o Mr. Smith will benefit from construction of a “permanent” ramp system. o While Mrs. Smith anticipates a wheelchair ramp to the back of her new home, a

portable ramp should also be obtained for use to the front part of the home. As previously noted Gracie has used both leg and arm orthotics in the past and continues

to use leg orthotics to maintain her physical mobility and prevent contractures. These pieces of personal equipment will require less frequent replacement now, compared to Gracie’s youth, and should be continually evaluated by the involved therapists for proper fit and function.

Instrumental Activities of Daily Living: Instrumental Activities of Daily Living are generally regarded as telephone use, processing mail and paying bills, money management, shopping, meal preparation, housekeeping, and laundry. Gracie is unable to perform any IADL’s and is dependent upon her family and other care provider for these functions.

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Cognitive Status: Gracie is alert and recognizes familiar persons and places. Gracie indicates her recognition and her basic emotions of pleasure, pain, joy, frustration, or fear by exhibiting facial expressions, by making specific sighs, cries, or sounds, and by use of body language. Her cognitive level cannot be tested by conventional means due to her level of disability and severe mental retardation. Psychosocial/Emotional/Behavioral Issues: Gracie’s psychosocial sphere is currently comprised of her family of origin, her part time caregiver, and the personnel and students at her school. Gracie enjoys time spent with other people and enjoys having attention focused on her. If she is not getting the attention she wants, she will make noises or throw objects to get attention. Gracie enjoys interacting both one-on-one and in groups, and she enjoys being in groups with other young adults. As Gracie is unable to self direct her use of recreation time to a great extent, her parents and care providers supply her with sensory stimulation type activities and stimuli that she finds enjoyable to participate in and observe. These activities include music, musical toys, soft/tactile touch items such as pillows and blankets, and toys that produce lights, sound, or vibration. One of Gracie’s more recent favorite items is a wedge that plays music. Gracie has benefitted in the past from interactions with animal assisted therapy, as she participated in the “Strides” horseback riding program for special needs children. Gracie also enjoys interacting with the family cat and the two family dogs. The family home has a swimming pool, as Gracie was found to greatly enjoy floating and playing in the water. Ongoing support and assistance for parents and care providers to locate and involve Gracie in these types of appropriate activities will provide her with ongoing benefit and aid in achieving maximized quality of life. Gracie’s emotions and behaviors have changed favorably over recent years and as well with the changes in her medication. Overall, Gracie is happy and pleasant most of the time, though she exhibits a range of happiness, sadness, stubbornness, defiance, and agreeability common to most children and adults. Her behaviors at this time are able to be readily managed by those familiar with her. However, Gracie had behaviors when she was younger that included screaming uncontrollably and crying frequently when she would become upset. Additionally Gracie would at times hit her mouth with her hands and bite down on her hands. Gracie’s neurologist added clonazapam to the medication regimen, and her mother indicates that this has helped a great deal in recent years. Family/Significant Others: Gracie’s parents are Gina Smith and Gracie. Mrs. and Mrs. Smith divorced in October of 2004 after having been married for seventeen years. Gracie lives with her mother, Gina, and her two brothers Kyle Smith age 17 and Justin Smith age 13. The divorce was not particularly amicable and Gina and Scott struggle to co-parent efficiently, as their communications are considerably strained. Currently Gracie’s father lives approximately twenty minutes away in the town of Coal City, Illinois. Gina and Scott have joint custody of the minor children. Gracie’s father has visitation with Gracie and his son every-other weekend, though Kyle has refused to participate in these. Currently he comes to the family home in Wilmington,

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picks up Gracie, Justin, and Gracie’s handicapped accessible van, and takes them to his home. Kyle and Justin are reported to get along well with and interact appropriately with Gracie. Gracie and Gina both have involvement with new significant others with whom they cohabitate. Gina is engaged to be married to her significant other, Brad, in the fall of 2006. George Sr. has not indicated whether or not he intends to marry her significant other, Kelly. Both Brad and Kelly are involved in Gracie’s care, as they are present in the households of the biological parents. The extended family members, the grandparents, aunts, and uncles, are only peripherally involved in Gracie’s life and do not have significant, routine, or regular contact with her at this time. Caregiver/Attendant Care Issues: Gina Smith has been Gracie’s primary caregiver. She has had varied levels of help from both agency and privately hired individuals in the past. Most recently Gina had assistance from a privately hired lady named Debby Vine. Debby Vine’s employment was recently terminated due to concerns about her having her own personal problems that could have put Gracie at risk. When Mrs. Smith had routine caregiver help from Debby, she was working part time between three and five hours per day, for two hours before and three hours after school, five days per week. This assistance was helpful to Gina as she has another child who is also still in school in addition to Gracie, so the assistance allowed her to better fulfill all of her parental and household responsibilities. Since Debby’s termination Mrs. Smith has hired her fiancé’s daughter, Carla, to help with Gracie. To date there is no indication that Mr. Smith is aware of these recent changes, and Life care Innovations anticipates that issues will arise when she learns of the changes. The hired caregiver Debby Vine had initially come to the employment arrangement through a licensed, bonded and insured agency, but later left the agency and was hired by the family privately. The rate charged by the agency is unclear, but the recent rate that Debby Vine was receiving as a private caregiver was $20 per hour. Because Debby Vine was just recently terminated, and because the family is in the process of planning relocation, Gina did not feel that hiring through an agency would provide her with help that could offer continuity to her daughter after the move that is planned to take place in a few months. Lifecare Innovations, the Trust Company, and Mrs. Smith have discussed the benefits and protections afforded to the estate by the use of licensed, bonded and insured providers. Lifecare Innovations consistently recommends the use of licensed, bonded and insured providers to minimize the risks to the estate and to the client. Mrs. Smith indicates that the agency level of caregiver support will be sought by the family after the move to the new home is completed in the upcoming summer.

Caregiver Costs: The 1993 Life Care Plan provided the guardian of estate with a formula for calculating attendant care costs and that formula has been in place and providing payment to Gracie’s parents for their role as primary caregiver. The formula includes a calculation of daily rate for use through age eighteen and a daily rate for use after age eighteen. The basic formula in the 1993 plan allowed for $13.50 per hour to be paid for all hours that Gracie was not in school, and this was adjusted slightly over time for inflation. The 1993 plan notes that after the age of 18 the parents are no longer legally responsible for Gracie and as such offers a daily rate

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recommendation of $135 per day from age 18 through life expectancy. The hourly rate has been continued by the Trust as the daily rate in the 1993 plan is no longer accurate and there has been the divorce of the parents. When Mr. and Mrs. Smith were married there was one payment made to them for attendant care. Since the divorce and visitation days that Mr. Smith has, the Trust has been paying Mrs. Smith for the days she spends with Gracie and Mr. Smith for the days he spends with Gracie. Currently both Mr. and Mrs. Smith are compensated at between $155 and $186 per day, depending on whether or not Gracie is in school. The 2007 accepted market rates for attendant care provided by family members or private individuals is $12 to $15 per hour. The rate paid to licensed, bonded and insured agencies for homemaker or certified nurse’s aides is $17 to $22 per hour. The current live-in rate is $180 to $200 per day. Lifecare Innovations supports the Smith family members continuing to receive payment that is equal to the upper range of the usual and customary rate paid to family members. The calculations for accepted rates of pay to family members takes into account what the individual is losing in earnings by not otherwise working outside the care giving role. Given that consideration, some professional such as nurses or doctors, are frequently compensated at a higher rate despite being family members. It is customary and appropriate for the Trust to compensate only one entity at a time for care provision for Gracie. For example, when Mr. Smith has Gracie at his home, he should be the sole person compensated. It is appropriate for the cost of care that the estate pays to the family members should not exceed $200 per day. When Mrs. Smith has “outside” help in the home that is compensated for Gracie’s care, this should be considered as respite care. If external care is in the home for consecutive days, the Trust is appropriate to pay only the respite care provider for that time. The goals of utilizing the recommended and marketplace accepted pay rates are to support the clear difference between family provided and agency provided care, and to promote fairness to both the estate and the care providers. Uniformity of pay for equal time between the two parents is also appropriate and imperative. For compensation purposes the parents will need to have a working agreement to communicate to the estate their time spent caring for Gracie when the visitation schedule is in place. The ability to round the day to the nearest four hours, or ¼ day, interval will make calculations less cumbersome for all involved. Thus if Mr. Smith takes Gracie on Friday at 6 pm, and returns her at 6 pm on Sunday, he then has Gracie for ¼ of Friday, all of Saturday, and ¾ of Sunday- for the equivalent of two days. To further support equality for Gracie’s parents, issues of distance and travel are considered. As Mrs. Smith has initiated the move that will place Gracie over an hour from her father, it is not unreasonable to expect that this will create some burden of time and expense for Mr. Smith. Accordingly, the estate is appropriate to provide payment for travel expenses to Mr. Smith and to consider the time he spends traveling into the calculations of time spent with his daughter. Facility: At this time there is no family anticipation of Gracie being placed in a residential facility. Both of Gracie’s parents are opposed to facility care as an option for Gracie. The issue of facility care is outlined here for informational purposes only. If Gracie was to reside in a facility she would require a custodial care facility that serves persons with severe and profound

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disabilities. There are relatively few choices available for individuals with Gracie’s level of needs that are specifically tailored for persons with developmental disabilities. Examples of these types of facilities in the Chicagoland area that are fairly well known include Misericordia Home and Marklund. Frequently these types of specialized facilities that serve younger persons have extensive waiting lists, and can also have age of admission limitations (i.e., pediatrics only) and/or geographical boundaries. The technical classification for the type of care that Gracie would require in a facility is ICF-DD, or intermediate care facility for developmental disabilities. This is a less complex level of care than skilled nursing care, and focuses on adults more than elderly. The cost of this care is often paid by Medicaid or private funds in a fashion similar to that of nursing home care for older persons. The cost of facility care is generally between $5,000 and $6,500 per month, though it can be in excess of this dependent upon geographic location and actual care required. Facilities also can offer short-term respite care within their accommodations, and some organizations that operate ICF-DD facilities also will offer in-home respite care services. These services are beneficial for Gracie’s family to be aware of, should the circumstances arise when such respite becomes desirable or necessary. Environmental Issues: There are no environmental hazards present, as both parents appropriately maintain their homes in neat, clean and orderly conditions. Home Management and Home Modification Issues: Because Gracie is unable to walk, produce speech, or complete self care related tasks, her relationship to her physical environment requires special attention. Specific environmental considerations and adaptations are necessary and appropriate for Gracie to promote her safety, comfort, and wellbeing whether he is at school, at home, or traveling. The house that Gracie lives in currently with her mother, in Wilmington, Illinois, was specially designed to take into account these issues, and Gracie has lived there from the time he was about six years old. This home is being sold by Gracie’s guardian of estate to facilitate the move Mrs. Smith has planned to a new home in Chatsworth, Illinois. Mr. Smith’s current home where Gracie visits every other weekend is a ranch style house located in nearby Coal City, Illinois. Home modification issues were considered for both Mrs. Smith’s and Mr. Smith’s respective homes: Mrs. Smith’s Home: Gina Smith’s recently purchased new home was bought personally without financial involvement of Gracie’s guardian of estate. Gina has plans for the family to take occupancy in approximately six to nine months, which will be after she has remarried. The plans are for the home to accommodate Gina, her new husband Brad, and her three sons, Kyle, Justin, and Gracie. The house is a two-story refurbished farm-house style home with several smaller bedrooms on the upper level. The plans are for Gina’s son’s Kyle and Justin to occupy the upstairs bedrooms. The lower level of the home includes the kitchen, dining room, and living room, which will be accessible to Gracie. Lifecare Innovations has reviewed with Gina her desire to put an addition on the home, part of which would be specifically tailored to meet Gracie’s special needs. An accessibility specialist, A to Z Mobility, was obtained as well to do an on-site inspection of the existing property, to make recommendations as to the appropriateness of a home addition for Gracie, and to

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participate in discussions about the details of what this would entail. A to Z mobility is experience in completing all types of home renovations and equipment projects including house additions, home modifications, installation of bathrooms, installation of specialized lifts, installations of elevators, building of wheelchair ramps, and supplying personal equipment (beds, commode raisers, dressing aids, etc.) to disabled persons. The experience, knowledge and sensitivity of the A to Z principle owner has so impressed Mrs. Smith that she has strongly concurred with the option of having A to Z place a bid with her and the Trust for completion of the actual addition project. The desired home addition plans to include a handicapped accessible ramp coming into the back of the home from the garage, a room addition to house Gracie’s bedroom/therapy room, and her handicapped accessible customized bathroom. Gracie’s bedroom will be oversized with a half wall dividing her sleeping area from her recreation area, and an oversized doorway to her separate bathroom that will have a roll-in shower, toilet, and sink. An overhead track system will be installed to allow Gracie to be “lifted” from her bed with little effort by the caregiver, and moved in a sling along the overhead track directly into her bathing area, where he can be lowered onto her shower gurney for her bathing. Then, at the conclusion of bathing, he can be “tracked” either into her therapy area, or into her bed area, for lowering onto the mat table, floor, or bed as appropriate for dressing or for sleeping. The plans include padding/carpeting to be installed upward from the floor onto the lower portion of the walls, so that when Gracie is spending recreation time on the floor he will not be able to injure her head if he bumps the walls, which at times she is prone to do. Accommodations for storage of clothing, equipment, and supplies will be included in the details of the plan so as to allow adequate space for Gracie’s personal items and convenience for the caregivers. These room addition plans are appropriate for Gracie as the current structure of the existing house would not be able to accommodate her recreational and hygiene needs. The addition to the home does propose some difficulty to the estate of young Gracie. The new home is not an estate owned property and home improvements and increased value will be a loss to the estate. In order to compensate for this situation we recommend an alternative arrangement that is both fair to the estate and to the family. The estate could loan the money for the estate approved renovation plans to the family. Gracie could then pay rent back to the family equal to the mortgage of the loan. In the future when the home is sold, the loan will be paid off thus not losing the investment by the estate. Gina has indicated that she would like the room addition to include not only Gracie’s bedroom and bathroom on the ground level, but also a master-suite bedroom and bathroom above Gracie’s area. This room would be used by Gina and Brad presently, though Gina indicates that in the future, when the other sons have left home and/or when she requires full time help with Gracie due to her own aging related issues, a caregiver could then reside in the upper level accommodations. It is really up to the guardian of the estate to approve the addition to the home assuring that the money spent is appropriate for young Gracie’s benefit. The estate may or may not support the master bedroom concept that without an elevator will not be accessible to the ward.

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Mr. Smith’s Home: Mr. Smith’s home is not currently wheelchair accessible. When Gracie comes to visit Mr. Smith is required to carry Gracie into the home separately from her wheelchair, as there are four steps up to the front porch of the home. Once in the home, Gracie’s wheelchair is able to be maneuvered in and out of the rooms. Gracie has her own bedroom, and shares the home’s one bathroom. The bathroom is a traditional style of an average size with a standard bathtub and toilet. For bathing Mr. Smith lifts and places Gracie into the tub and lifts her back out upon completion of the bath. Lifecare Innovations discussed in detail with Mr. Smith options for making the home more accessible to and comfortable for Gracie. The accessibility specialist accompanied LCI as well, for an on-site visit to the home to assist with discussion of options. A wheelchair ramp is clearly appropriate and details of the proposal for this were completed. Bathing for Gracie can be improved in one of two ways. The most immediate remedy to alleviate the need for lifting Gracie in and out of the bathtub would be to install an overhead track system and sling in the hallway just outside the bathroom door where Gracie could be placed into the sling from her wheelchair. From there Gracie could be propelled along the track to a spot directly above the bathtub where he could be lowered into the tub. This option would alleviate the current lifting by the caregiver, which would improve safety for Gracie and the care provider. The bathroom is too small to accommodate Gracie being well dried and dressed in the space. To facilitate dressing Gracie would require that he be transported back to her bedroom in her wheelchair, where she could then be placed either on her bed or on the floor. The installation of an overhead track system above the bed would facilitate the transfer from the chair to and from the bed. It is noteworthy that Gracie’s bedroom is down the hall from the bathroom, probably 20 or 25 feet. Gracie’s bedroom is the largest of the three bedrooms in the home, at approximately 12 or 13 square feet. A second option to accommodate bathing would be to modify Gracie’s bedroom and convert the existing closet space into a handicapped shower area that would accommodate a shower gurney. This would allow Gracie to be moved, again via an overhead track system, directly from her bath to her bed area safely and without traversing the hall in the wheelchair. Though more encompassing in time, material and costs than the prior option, Lifecare Innovations supports this option as a means to maximize Gracie’s safety and comfort in addressing her hygiene and personal care needs. The overhead track system could be installed as well over the existing bathtub, as this would provide a “back-up” method for meeting Gracie’s hygiene needs, and also could be used in the interim time until the shower installation in Gracie’s bedroom was completed. A third option was also discussed, which would be to place an addition onto the side of the home that would significantly enlarge Gracie’s available comfortable space by creating a family room area and a separate handicapped accessible bathroom. This option is discussed because the current structure of the home provides one central recreation space, the living room. The living room has a hard floor surface, is directly off of the front entry, and not particularly accommodating for Gracie to spend time on the floor. Additionally, if there is a family gathering or event in the living room, Gracie’s modestly sized bedroom then becomes the only alternate space for her to go to if he becomes over-stimulated or has other needs.

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Financial Issues:

Discussion Points Regarding Home Modifications: The Trust Company as guardian of estate manages all the financial issues on Gracie’s behalf. Although the goal is to be equitable to both parents, it is recognized that Gracie’s mother’s home constitutes her primary residence. It is appropriate for her father’s home to be accessible and comfortable for her visits, though it need not mirror her primary residence to accomplish this. Safety and comfort are the primary considerations. Blankets, cushions, supports, and other appropriate aids to Gracie’s environmental needs are appropriate additions for both parents to routinely make for Gracie and for the Trust to support. Safety equipment items and modifications such as cellular phones to provide back-up to land lines and safety when traveling, non-slip surfaces to meet care giving concerns, and padding placed on walls to protect from injury, all are appropriate home-related items that both parents should be cognizant of the Trust’s ability to support. The Trust is appropriate to be cognizant of their ability to realize return on capital investments and not to invest Gracie’s money where there is significant risk of loss. For the Trust to invest monies in any property that “Gracie” does not own (i.e., that the Trust solely owns), is not truly in Gracie’s best interest, as the Trust has no way to re-coup or gain on their investment. If the trust were to invest in substantial home additions to either parent’s home, and the parent sells the home, the trust has no automatic ability to realize return of the invested funds. To be equitable to both parents, the Trust may consider doing house additions, but they will need to secure the investment for these to be in Gracie’s best interest. Options for the Trust to secure their interest in property they do not own includes means such as loaning the funds to the parent or placing liens for invested funds against the title on the parent’s property. Utilizing Gracie’s adult ability to “pay rent” is another means of addressing the cost issue of an addition at her primary residence, though rent is not an appropriate consideration at her father’s home, where she visits. Life Care Plan Financial Issues: Lifecare Innovations has reviewed the cost of care issues set forth in the 1993 Life Care Plan and has revised the plan to bring it accurately up to date. Please see attached Care and Maintenance Budget in spreadsheet format for details of costs related to:

Medical appointments Medical procedures Medications Equipment and Assistive technology Personal care supplies Attendant/caregiver issues Day/Vocational programming

The housing related costs and recommendations have not been assigned numerical values at this time as they are deferred to the authority of the guardian of estate. To facilitate further estate guardian review and discussion, the primary categories of anticipated/recommended expenditures are included in the format.

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Educational and Vocational Issues: Gracie attends school at United Cerebral Palsy as her special education, public funds supported school. From birth to age 21 the government mandates services for persons with disabilities via the IDEA (Individuals with Disabilities Education Act) federal legislation. These services include transitional planning for the time when the individual reaches age 21 and is no longer covered by the act. Gracie’s last year of school will be the school year 2007/2008 as he will turn 21 in the summer of 2008. Her mother expresses interest and desire in enrolling Gracie in a day/vocational program upon her completion of public school, as such will provide her with ongoing psychosocial stimulation, activity, and interaction. It is yet to be determined where Gracie will attend school for her last year that starts in the fall of 2007. Gracie’s mother is in the process of exploring the two possible options and has been informed by the school personnel that the home district where she is moving to, in Iroquois County, will have a great influence on the outcome of the discussions. The two options are either for Gracie to continue on for her last school year at the United Cerebral Palsy School, which is in Joliet, Illinois, or to transfer to the high school in Cissna Park, Illinois. The “new” school district personnel have informed Mrs. Smith that they need to make the determination of whether or not the Cissna Park School is appropriate to meet Gracie’s needs. They have informed Mrs. Smith that the Cissna Park School does serve children with needs similar to Gracie’s; however, they require further time and data before they will commit to being able to serve Gracie specifically. Mrs. Smith has been informed that the alternative is for Gracie to continue on at United Cerebral Palsy School. The consideration of transportation to United Cerebral Palsy is an issue for the discussions as well, as the school is approximately 80 minutes from the home in Chatsworth. Though Gracie enjoys riding in the bus, it maybe a drawback to the school to perform this distance of transport. Gracie’s Individual Educational Plan Meeting, or IEP meeting, is scheduled to be in April this year. Mrs. Smith has invited the personnel from the new school district to attend and participate in the school and post- school planning and transition planning for Gracie, and she has invited Lifecare Innovations to attend as well. This will be a crucial meeting for determining Gracie’s next steps towards her final school year and her future adult programming. The options for adult programming again have two clear options with several variables and choices associated with either. The first option would be for Gracie to continue at United Cerebral Palsy in their Adult Day Program. Currently the program is housed in the same building as the school that Gracie is attending in Joliet. The other option is the Day Program through the ARC of Iroquois County, located in Watseka, Illinois. Either day program would provide Gracie with up to five days per week, five to eight hours per day, of structured and supervised activity. Most adult day programs are supported by Public Aid Waivers that allow the state to fund the program for disabled individuals who are Medicaid eligible. Most adult day programs also have a component that allows participants to pay privately. Some adult day programs are more geared towards and accustomed to serving only Medicaid eligible participants. Gracie will be entering an adult day program as a private pay individual, and the most common way for charges to be calculated in private-pay based programs is hourly. The variables of rate of charge, hours of availability, flexibility of schedule, and availability of “extracurricular” activities will depend upon the program. These variables can begin to be explored during the upcoming IEP Meeting in June. Lifecare Innovations will encourage both

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parents to contribute to discussion with one another regarding Gracie’s enrollment in the program best suited to her needs. Summary: Gracie is a 19 year old disabled young lady who resides with her mother, who is her guardian of person. Gracie suffers from profound disabilities and requires total care much as a young baby would require, which necessitate an inclusive and complex care plan. Gracie’s parents have been divorced since October 2004. Gracie resides with her mother and her siblings, and has visitation with her father every other weekend. Gracie’s mother is engaged with plans to be re-married to her fiancé Brad in June 2007, after which they plan to move to a new house in a new area. The home in which Gracie and her family currently live is owned by Gracie’s guardian of estate, the Trust Company, and is being sold to facilitate and accommodate the family’s move. Neither Gracie nor her Trust will have any ownership in the home purchase in Chatsworth, IL where the family is moving to. Gracie will continue to reside with her mother and she will continue to attend school until the conclusion of the 2007/2008 school year, at which time he will be twenty-one years old. It is yet to be determined if Gracie will continue on at United Cerebral Palsy School or if he will transition to a new school nearer the new home. Discussions have recently begun as well regarding the options that are available for Gracie for adult day programs after he completes her last school year. Both the schooling and transition issues will be discussed at the upcoming IEP Meeting and more information will be gained at that time. Because this is a key transitional time in Gracie’s life from several perspectives, the Trust sought Lifecare Innovations to review the current issues with a goal of updating the Life Care Plan written in 1993 when Gracie was six years old. Lifecare Innovations has reviewed Gracie’s care and issues in all spheres of her life and has delineated and commented upon these as appropriate. It is anticipated that this current Life Care Plan will be subjected to a mini-review on an annual basis and will be revised every five years. Some of the larger issues that are encompassed in this current plan are not anticipated to resurface with any regularity, if ever, after Gracie transitions from her current home to a new home, and transitions from school program to adult program. At the time of this current review, there are numerous home modification issues that have come to the forefront. The home purchased by Gracie’s mother is not handicapped accessible and is not equipped to meet Gracie’s safety and comfort needs; as such, Gracie’s mother is asking for the Trust to approve a significant addition onto the property to accommodate Gracie. Gracie’s father’s home is also not handicapped accessible and does not currently meet Gracie’s safety and comfort needs. Lifecare Innovations has investigated both properties and has involved an accessibility specialist to participate in the property reviews. The investigations have revealed available options and choices, though these are to a great extent deferred to the discretion and authority of the Trust, with understanding that the Trust is ultimately accountable to the courts. Recommendations: The preceding Life Care Plan and attached Care and Maintenance Budget is respectfully

submitted and recommended to be considered accurate for the upcoming five years Reviews to the Life Care Plan are recommended to be conducted annually to monitor for

changes to the ward’s health and circumstance and to allow pro-active problem solving

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Specific issues can be addressed currently in several areas to facilitate the soundness of the plan including:

School and Post-Secondary Planning: Gracie’s costs/benefits of continuing to attend the United Cerebral Palsy School vs.

transferring to the Cissna Park School is an issue that merits input and discussion from the involved school personnel and Gracie’s parents

o Supports available for Gracie toward transportation will be a key issue o Appropriateness of school program will be a key consideration o Gracie will benefit from strong advocacy to ensure that her needs are not placed

second to the convenience of the school districts o The school district may be appropriate to consider special accommodations to

ensure the right choice for Gracie, such as the use of an aid on the bus o Lifecare Innovations will be available to attend the upcoming IEP meeting to

assist in advocacy with the approval of the family and the Trust Gracie will benefit from thorough exploration of both United Cerebral Palsy and ARC of

Iroquois County Adult Day Programs Gracie will benefit from exploration of Special Recreation Association options in her new

home county as these may offer extra activities and options for interactions Housing and Home Modification Issues:

Home Addition to Chatsworth House: It is appropriate for Gracie to continue to reside with her mother who is her primary

caregiver and to move with her and the family to the new home in Chatsworth The Trust as guardian of estate will be appropriately cognizant and fully informed of

ownership on this property as it pertains to not being owned by young Gracie It is appropriate for the home to be modified to be fully accessible to and comfortably

equipped for young Gracie It is not appropriate for the Trust to have ownership in an asset that it does not control;

i.e., for the Trust to have interest in the capital improvement of the property is not correct when the Trust cannot realize the return due to ownership and appreciation issues

o i.e., Gina and Brad do not marry o i.e., Gina and Brad marry but later divorce o i.e., Gracie requires facility placement for catastrophic medical reasons o i.e., Gina and Brad live in the home for a time then plan to move; in any of these

or similar events the Trust could not sell the house and therefore could not realize return on the money put for the proposed improvement/addition

o As the house appreciates proportionally, the Trust has limited ability to profit from the initial investment required for the improvement/addition

It noteworthy that while the entire family will have benefit from the portion of the home that will be added on, Gracie will not have access to the rest of the entire home as the second floor is physically inaccessible to her

It is also noteworthy that while Mrs. Smith is requesting a second story in the addition that she will be able to use as a master bedroom suite, Gracie will not be able to access this area herself

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It is appropriate for the Trust to make the initial outlay of funds to Mrs. Smith to facilitate the addition on the home, provided that there are arrangements for the Trust to realize their investment if circumstances change; this could be accomplished via:

o The Trust placing an appropriate lien against the property o The Trust loaning the funds to Mrs. Smith and then paying the loan over time o The Trust utilizing a combination of lien and loan to secure their investment and

return

Housing Expenditures for Gracie as an Adult: It is appropriate for the Trust to contribute proportionally to real estate taxes, utilities, and

housing maintenance expenses on Gracie’s behalf. This can be included in a “rental amount” or in formula of ¼ of the expenses since there will be four family members present.

Home Modifications to Mr. Smith’s Coal City House: It is appropriate for the home to be safe and comfortable for Gracie to visit on a routine

basis and for the Trust to support and facilitate this The same concerns for ownership and realization of investments that apply to the Coal

City house, also apply as listed above for the Chatsworth house Recommended modifications to the Coal City house include choosing from among three

options to accommodate safe and comfortable bathing; Lifecare Innovations supports the second of the three options for reasons cited above; the options are:

1) Installing an overhead track lift system for use with the existing bathtub, only 2) Installing a shower area in Gracie’s existing bedroom using the closet space,

while putting track over the existing bathtub as an interim solution 3) Building a house addition with a separate room space and a new separate

bathroom space Mr. Smith’s house necessitates the building of a handicapped accessibility standard

wheelchair ramp to the front entrance of the home

Attendant Care Issues: It is recommended that additional support to family be provided by licensed, bonded and

insured providers to minimize risks to the estate All relationships of caregivers utilized should be disclosed to all involved parties,

including the Trust and both biological parents. Since the relationship with the parents is sometimes strained it would be beneficial to get

agreement from both parties in regards to caregivers chosen. Open discussion of attendant care issues will be encouraged to minimize risk of discord

and unrest to young Gracie and the family Hiring of relatives and friends could be risky in this situation since the parents have

significant strife in their relationship. Pay for family is supported at $200 per day when they are performing as primary

caregivers As primary and secondary caregivers, it is appropriate for the Trust to facilitate health

insurance and life insurance for both of the parents and bear the costs of these benefits

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that are customary to employment. Keeping the parents healthy since they are a major part of the care plan at a significant reduction in cost is a benefit to the estate.

Care/Case Management The parents have a strained relationship and would benefit from a neutral, third party to

evaluate the care on an ongoing basis. The role of the case/care manager would also provide a professional view of the services

provided to the client, review of the therapeutic environment, review of the occupational programming, and evaluation of potential long term placement and programming as the child transitions into adulthood.

Transportation: Gracie’s father is entitled to her transportation time and expense being covered by the

Trust at actual time and current IRS mileage rate o These calculations apply to miles/time in her own vehicle when traveling to or

from picking up Gracie o Time calculations are applicable to calculating attendant care time spent

The 1993 plan allowed for the handicapped accessible van to be replaced every five years; the current van is a 2005 and is scheduled to be replaced by 2010

Lifecare Innovations supports the family and trust permitting the ‘old’ van’s possession to pass to Mr. Smith for her use in transporting Gracie, while Mrs. Smith acquires possession a new van

o Should the Trust and family agree to proceed with this, then it would negate the use of Mr. Smith’s personal vehicle for transporting Gracie

Equipment to Facilitate Care and Comfort: Several items of equipment are recommended to be upgraded on an as-needed basis when

they reach the end of usable life; these are itemized on the spreadsheet and include o Wheelchairs o Shower Gurneys o Hoyer lifts o Standers

It is important that equipment is available as appropriate at both households to facilitate Gracie’s care and comfort; some items have not been available at, or requested for, Gracie’s father’s household but are itemized as recommended by LCI for both the mother’s and father’s households including:

o Hoyer lift (as back-up to overhead track system and for areas with no track) o Easy Stand 5000 stander to facilitate therapy activities o Sensory stimulation activity aids

Full electric hospital beds have been requested by and are recommended for both parental households

A mat table that is portable for ability to be transported is recommended for Gracie’s primary residence

Lifecare Innovations is available to the family and trust for consultation on further equipment issues or questions as these may arise over time

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Medical Care Issues: Gracie will benefit from obtaining a general medicine doctor/ internist to follow her

overall health maintenance in her new home area after the move; the new physician will benefit from receiving copies of Gracie’s past medical records

Gracie will benefit from determination of whether or not her past pediatric orthopedist will continue to follow her care

o if indicated Gracie will benefit from referral to a to local adult orthopedist o Gracie will benefit from a review of her scoliosis status and from routine scoliosis

monitoring Gracie will benefit from a follow up appointment for her Ophthalmology care Gracie and her care providers will benefit from ongoing, routine review and consultation

with a Physiatrist for her physical medicine and rehabilitation care, which will not be school supported when Gracie transitions from school

o Gracie and her care providers will benefit from routine interactions with physical therapy, occupational therapy, and speech therapy professionals

o Gracie will benefit from routine orthotic monitoring and management

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Care Maintenance BudgetGracie Smith2007-2012

Description Unit CostWeekly

Frequency Weekly CostMonthly

Frequency Monthly Cost Annual Frequency Annual Cost Total Per YearTotal Cost for Budget

Period

MEDICAL AND REHABILITATION CARE

Neurological CareInternal Medicine Examination $100.00 2 $200.00 $200.00 $1,000.00Anti-convulsant blood level (if needed) $130.00 1 $130.00 $130.00 $650.00Complete Blood Count with Differentials (CBC) $110.00 2 $220.00 $220.00 $1,100.00Complete Metabolic Profile (CMP) $210.00 2 $420.00 $420.00 $2,100.00EEG (if needed) $490.00 1 $490.00 $490.00 $2,450.00MRI (if needed) $1,570.00 1 $1,570.00 $1,570.00 $7,850.00Neurological Examination $170.00 2 $340.00 $340.00 $1,700.00

Total Neurological Care $2,780.00 $0.00 $0.00 $3,370.00 $3,370.00 $16,850.00

Orthopedic Care

Physician office visit $250.00 2 $500.00 $500.00 $2,500.00X-ray of bilateral hips $175.00 1 $175.00 $175.00 $875.00Scoliosis screening $350.00 1 $350.00 $350.00 $1,750.00Hamstring surgery (day surgery, for contracture release, if needed)** $13,000.00 0.2 $2,600.00 $2,600.00 $13,000.00

Total Orthopedic Care $13,775.00 $0.00 $0.00 $3,625.00 $3,625.00 $18,125.00

Potential Hospitalizations

Hip/Ortho related, if needed (14 day stay including doctor & hospital costs) $183,400.00 0.2 $36,680.00 $36,680.00 $183,400.00Seizure related, if needed $19,020.00 0.2 $3,804.00 $3,804.00 $19,020.00

Total Hospitalizations $202,420.00 $0.00 $0.00 $40,484.00 $40,484.00 $202,420.00

Physical Medicine and Rehabilitation

Physiatrist evaluation (annual) $185.00 1 $185.00 $185.00 $925.00Physical Therapy Evaluation (annual) $240.00 1 $240.00 $240.00 $1,200.00Physical Therapy Sessions, ongoing $165.00 3 $495.00 $25,740.00 $128,700.00Occupational Therapy Evaluation (annual) $240.00 1 $240.00 $240.00 $1,200.00Occupational Therapy Sessions, ongoing $165.00 3 $495.00 $25,740.00 $128,700.00Speech Therapy Evaluation (annual) $225.00 1 $225.00 $225.00 $1,125.00Speech Therapy Session, ongoing $225.00 3 $675.00 $35,100.00 $175,500.00Care Management for estate (annual) $1,200.00 1 $1,200.00 $6,000.00 $30,000.00

Total Physical Medicine and Rehabilitation $2,645.00 $1,665.00 $0.00 $2,090.00 $93,470.00 $467,350.00

Ophthalmology Care

Ophthalmology visit $175.00 1 $175.00 $175.00 $875.00Glasses (lenses and frames) ** $210.00 0.2 $42.00 $42.00 $210.00Strabismus surgery (day surgery, both eyes, if needed)** $12,300.00 0.2 $2,460.00 $2,460.00 $12,300.00

Total Ophthalmology Care $12,685.00 $0.00 $0.00 $2,677.00 $2,677.00 $13,385.00

Dentistry

Exam and cleaning (two per year) $95.00 2 $190.00 $190.00 $950.00Cleaning without exam (two per year) $60.00 2 $120.00 $120.00 $600.00Restorative dental procedures (cavity filling, if needed) $110.00 1 $110.00 $110.00 $550.00X-rays (full set)** $85.00 0.2 $17.00 $17.00 $85.00

Total Dentistry $350.00 $0.00 $0.00 $437.00 $437.00 $2,185.00

TOTAL MEDICAL AND REHABILITATION CARE $234,655.00 $1,665.00 $0.00 $52,683.00 $144,063.00 $720,315.00


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Description Unit Cost

Weekly Frequency Weekly Cost

Monthly Frequency Monthly Cost Annual Frequency Annual Cost Total Per Year

Total Cost for Budget Period

CONSUMABLES

Medications

Depakote $269.68 1 $269.68 $3,236.16 $16,180.80Carbatrol $78.32 1 $78.32 $939.84 $4,699.20Clonazapam $37.84 1 $37.84 $454.08 $2,270.40Over the counter medications and vitamins $30.00 1 $30.00 $360.00 $1,800.00Total Medications $415.84 $0.00 $415.84 $0.00 $4,990.08 $24,950.40

Incontinence Supplies (Briefs, wipes, pads, lotion)Briefs (per case) $89.00 3 $267.00 $3,204.00 $16,020.00Wipes (per case) $6.00 2 $12.00 $144.00 $720.00Pads, night time (per case) $56.00 2 $112.00 $1,344.00 $6,720.00Reassure under pads (per case) $49.00 1 $49.00 $588.00 $2,940.00Skin protectant lotion (per bottle) $10.00 1 $10.00 $120.00 $600.00

Total Incontinence Supplies $210.00 $0.00 $450.00 $0.00 $5,400.00 $27,000.00TOTAL CONSUMABLES $625.84 $0.00 $865.84 $0.00 $10,390.08 $51,950.40

ASSISTIVE TECHNOLOGY AND EQUIPMENTWheelchair (custom fit "regular" wheelchair with custom seat)** $8,500.00 0.2 $1,700.00 $1,700.00 $8,500.00Wheelchair ("stroller" type) ** $2,800.00 0.2 $560.00 $560.00 $2,800.00Maintenance on wheelchairs (yearly) $250.00 1 $250.00 $250.00 $1,250.00Shower gurnee** $1,990.00 0.2 $398.00 $398.00 $1,990.00Fully electric custom bed with side rails (mother's household)** $2,200.00 0.2 $440.00 $440.00 $2,200.00Fully electric custom bed with side rails (father's household)** $2,200.00 0.2 $440.00 $440.00 $2,200.00Orthotics, if needed (splints, braces, misc. equipment) $800.00 1 $800.00 $800.00 $4,000.00Standers (Easy Stand 5000 with Options, mother's household)** $5,325.00 0.2 $1,065.00 $1,065.00 $5,325.00Standers (Easy Stand 5000 with Options, father's household)** $5,325.00 0.2 $1,065.00 $1,065.00 $5,325.00Hoyer lift and sling (mother's household)** $1,200.00 0.2 $240.00 $240.00 $1,200.00Hoyer lift and sling (father's household)** $1,200.00 0.2 $240.00 $240.00 $1,200.00Mat table for home therapy (mother's household)** $2,750.00 0.2 $550.00 $550.00 $2,750.00Sensory Stimulation Activity Aids (mother's household) $100.00 1 $100.00 $1,200.00 $6,000.00Sensory Stimulation Activity Aids (father's household) $100.00 1 $100.00 $1,200.00 $6,000.00TOTAL ASSISTIVE TECHNOLOGY AND EQUIPMENT $34,740.00 $0.00 $200.00 $7,748.00 $10,148.00 $50,740.00

ATTENDANT CAREPrimary caregiving, routine, daily rate $200.00 7 $1,400.00 $72,800.00 $364,000.00Respite caregiving, as needed, hourly rate $20.00 20 $400.00 $20,800.00 $104,000.00TOTAL ATTENDANT CARE $220.00 $1,800.00 $0.00 $0.00 $93,600.00 $468,000.00

TRANSPORTATIONNew Van (Mother)Purchase of new van ** $65,000.00 0.2 $13,000.00 $13,000.00 $65,000.00Auto insurance $500.00 1 $500.00 $6,000.00 $30,000.00Gas $100.00 1 $100.00 $1,200.00 $6,000.00Maintenance $25.00 1 $25.00 $300.00 $1,500.00Total New Van $65,625.00 $0.00 $625.00 $13,000.00 $20,500.00 $102,500.00

Old Van (Father)Automobile Insurance $500.00 1 $500.00 $6,000.00 $30,000.00Gas $100.00 1 $100.00 $1,200.00 $6,000.00Maintenance $25.00 1 $25.00 $300.00 $1,500.00Total Old Van $625.00 $0.00 $625.00 $0.00 $7,500.00 $37,500.00TOTAL TRANSPORTATION $66,250.00 $0.00 $1,250.00 $13,000.00 $28,000.00 $140,000.00

GRAND TOTAL COSTS $336,490.84 $3,465.00 $2,315.84 $73,431.00 $286,201.08 $1,431,005.40


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Description Unit Cost

Weekly Frequency Weekly Cost

Monthly Frequency Monthly Cost Annual Frequency Annual Cost Total Per Year

Total Cost for Budget Period

VOCATIONAL PROGRAMMINGRegular Day Programming $88.00 5 $440.00 $22,880.00 $114,400.00Transportation to Day Programming $50.00 1 $50.00 $2,600.00 $13,000.00Special Recreation Events $2,600.00 1 $2,600.00 $2,600.00 $13,000.00TOTAL VOCATIONAL PROGRAMMING (NOT INCLUDED IN TOTAL COSTS) $2,738.00 $490.00 $0.00 $2,600.00 $28,080.00 $140,400.00

HOUSINGPrimary, Mother's Residence (Amount to be determined by guardian of estate)Handicapped accessible home additions to mothers new residence TBD TBD TBDRent/expenses paid toward housing costs as adult at mother's residence TBD TBD TBDPrimary,Father's Residence (Amount to be determined by guardian of estate)

Wheelchair ramp into home (proposed rate; actual rate TBD) $3,650.00 TBD TBDHandicapped accessible bathing area (proposed rate; actual rate TBD) $20,000.00 TBD TBDTOTAL HOUSING (NOT INCLUDED IN GRAND TOTAL COSTS) TBD TBD TBD** Once in every 5 year reporting period.


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five years at a time - lifecare innovations · five years at a time ... gracie, profoundly...

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