Life Care Planners Offer Unique And Supportive Expertise

THIS ARTICLE DESCRIBES HOW Life Care Planners can help trust officers, relationship managers, estate planners and attorneys determine the future monetary requirements, in actual dollars, of a catastrophically disabled, pediatric or geriatric client. This can be done through the creation of a Life Care Plan for that individual's lifetime. Case histories are used to demonstrate how LCPs address the complex needs of such clients. The article concludes with a discussion of the ways in which the discipline of Life Care Planning complements the expertise of the trust officer.

One of the most difficult tasks confronting trust officers, estate planners and attorneys has been the determination of the future monetary needs of a client. Determining the lifetime needs of even the most healthy, problem free individual can, of course, be difficult enough. Making such determinations accurately on behalf of a client who is chronically or catastrophically disabled, either physically or mentally, can seem all but impossible.

If you are a trust officer who has managed funds for such a client for more than five years, you can no doubt recall the overwhelming number of questions and concerns that rapidly arose at the time you began working with that client: What are the real medical needs of my client? How much will these needs cost now? In the future? Will the condition of my client deteriorate? if so, how much will additional care cost? What type of housing will be required? What type of rehabilitation or education will my client need and what will the costs be? What if the parents of developmentally disabled Tommy predecease him? What if elderly Mrs. Jones calls me again for help in getting to her doctor's appointment?' What if I'm not even asking the right questions?

But what may have loomed as A monumental task just a few years ago has become less formidable due to the recent emergence of specially trained rehabilitation consultants called Life Care Planners.

Life Care Planners (LCPs) do exactly what their name implies they formulate plans that will attend to the physical and mental well?being of a client for that individual's lifetime. These plans are detailed descriptions of the special injury or incapacity the disabled individual has suffered, what progressive disablement can be anticipated and, most importantly to the trust officer in his/her capacity, the present and future monetary costs of all necessary care.

Actual Dollar Figures, Not "Guesstimates"

In the past, trust officers, estate planners and attorneys, working independently or as a team on a case involving lifetime disablement, often negotiated claims amounts with underwriters and claims adjusters. But underwriters traditionally based their amounts on what they saw as similar or typical past cases. Consequently, the needs of a specific case often were ignored, as were the probable effects of time. Armed with only the underwriter's opinion, the planners often would assume that the health related needs of the disabled, such as medication, orthopedic equipment and treatment, had stabilized and that these needs would not change in the years to come. Therefore, future financial needs often slipped by unrecognized.

LCPs take such future needs into consideration and develop individual's condition . . . to foresee the "unforeseen" expenses. This expertise allows the trust officer to truly manage each case rather than merely "putting out fires" with trust moneys.

In other words, after a LCP establishes the present and future financial needs of the beneficiary, the trustee can more effectively establish an investment program based upon those needs. Since the primary concern of a corporate fiduciary in such cases is to make sure the trust remains healthy and generates income commensurate with the needs of the client, this is particularly important.2

Actual Cases, Not Hypothetical Examples

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The following are three actual cases that more clearly illustrate the advantages of using LCPs. The first example involves an individual who had suffered a catastrophic injury. The second describes a dependent child's case and the third presents the situation of an elderly senior who wished to remain in his own home, even though he was suffering from health problems.

CASE #1: A Long-term Disability

Sam, a married man with two children, had experienced a closed head injury. The injury and its consequences quickly devastated the family. Proper health and support services never had been developed, so the family had been coping by attempting to care for Sam on its own. After a few years of struggling in this fashion, family members were burned out, feeling guilty and allowing Sam's disability to destroy their own lives. Furthermore, many of Sam's needs were not being properly met. When the family finally came to a bank administrator for help in managing its remaining funds, the administrator soon recognized the need for a professionally developed life care plan.

A life care plan for Sam incorporated cognitive training, periodic neuro-psychological evaluations, physical and occupational therapy for him and family counseling for the group. Recreational therapy, transportation needs, medication needs and aids for independent function also were included.3 Sam's life care plan made it possible for him to lead a fuller life, alleviated the family's anxiety and freed up the trust administrator's time to do the work for which he was trained successfully handling the family's trust through asset protection and management.

CASE #2: A Dependent Child

Another family had a developmentally disabled child. Lucy's parents were so protective of her that they prevented the medical specialist and the school therapist from providing what was required to help Lucy become independent. The trust administrator became acutely aware of the parents' overprotectiveness. He also realized that without a plan of action, the long-term cost to the trust would be significantly more and the trust would probably not provide for the full life of the child. The parents feared this, as well. Their solution to the problem, however, was to be extremely frugal with their money and in that way, conserve the trust.

The trust administrator called a LCP who was willing to meet and talk with the parents several times. Through these sessions, the LCP convinced the parents to become involved at a cerebral palsy center. There, Lucy's parents met and received reassurance from parents who at one time, had felt and acted as Lucy's parents were feeling and acting.

Because of this exposure, Lucy's parents began considering other opportunities for Lucy: an innovative wheelchair, orthotics, aids for independent function, respite care, transportation and architectural renovations. A life care plan was formulated that incorporated vocational concerns and an Individualized Education Plan (IEP). Medical, educational and community resources were contacted so that key people in these three areas could combine their input in developing this life care plan.4

In this way, the life care plan provided proper management of resources and prevented more costly medical concerns in the future. Meanwhile, Lucy's parents realized that through their over?protection, they were making their child more, rather than less, vulnerable to the difficulties of the outside world.5

As regards dependent children like Lucy, it is worth noting that the creation of a life care plan can encourage and assist ". . . parents in advocating for those services that need to be developed to fill in the gap between what is and what ought to be. It may be very difficult for parents of a 10-year-old to decide what type of residential or vocational environment they would like to see their daughter in at age 21. What must be impressed upon parents, however, is that unless they decide, others will and the decisions will be based upon available options, not necessarily upon the individual needs of the student [child] or the desires of the parents.6

A life care plan for a dependent child also can help parents confront the unpleasant - but very real possibility that they will die before their child and help them to make plans for just such a possibility. Here, too, the trust officer's fiduciary expertise can be of great value.

Joel Welber, an attorney who specializes in the use of trusts for children with developmental disabilities, observes that families who have kept their child at home and have not attempted to move their child into the mental health system are especially in need of a plan for the future beyond the lives of the parents as primary care givers in the family home.

From an estate planning perspective, Welber notes, these families can present the greatest challenge. Housing is, of course, a major issue and many of these parents have avoided addressing this issue.7 "The mental health system has not absorbed the child as a client, the parents have not relinquished control over the child and the child has not developed an expectation of living with persons other than the mother and father. If there is no plan for transition, the child ends up "jumping" to the head of the list for services on an emergency basis. However, the quality of services that are made available and the appropriateness of the resulting living arrangement can be problematic. Neither the child nor the "system" are helped by the family's failure to plan ahead."8 Through the use of a LCP, the trust officer can help provide a plan for transition and establish a solid financial future for the dependent child.

Both Sam's and Lucy's cases also reveal a number of other important ways a trust officer can, by bringing a LCP on board, improve not only the financial well-being of a client, but the overall quality of life for the client and the client's family, as well. For example, Sam and Lucy needed to learn to be more independent. Their families, by keeping them strictly within the home, had unwittingly kept Sam and Lucy from improving, both physically and mentally, and were exhausting themselves in the process. The trust officer's actions were instrumental in rectifying these situations.

Trust officers also should be aware that too many families still believe there are government funds to cover the mentally or physically disabled. Unfortunately, this is no longer the case. These funds are drying up 9 and hence, the proper management of the trust fund has become even more critical than in the past.

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CASE #3: An Elderly Senior

George, who was 78 years old and who had suffered a severe neurological deficit with respiratory complications, lived alone. His two children lived in another state. So George was sent home from the hospital to live alone and, with no assistance, use a ventilator,10 since he could no longer breathe on his own.

George's trust administrator became very disturbed by George's solitude and needs; she found herself spending a great deal of time with him and taking care of his ventilator equipment. The trust fund itself troubled her, as well. She feared unexpected, high bills for medical treatment and equipment.

Realizing that she needed to know just what expenses could be expected on a weekly, monthly and yearly basis, George's trust administrator contacted a LCP. Consultations were arranged which included George, his physicians and therapists. Together, they decided that George, who wanted to live at home, could do so, but only after a period of intensive services and training at a specialty facility.

This plan actually decreased George's anxiety by providing him with a road map of his future care. Projected evaluations were arranged and medication needs set up. Medications were shipped to him and an account was arranged, case management was prescribed, physician checkups and projected therapeutic modalities, such as respiratory therapy, also were included.

Further, because George had been embarrassed by the tubing in his nose, his social interaction had dwindled. The LCP recognized that this isolation also had a debilitating effect on George and stated the need for George to join a senior citizens club where he could enjoy social interaction with individuals whose experiences and concerns were similar to his. The LCP incorporated a Case Manager into George's life care plan to assist George in joining one of the local senior citizens' clubs. The Case Manager also was asked to oversee all of George's treatment programs. George's membership in a seniors' club improved George's overall therapy by giving him a more positive outlook on his situation.

The third case described above is particularly relevant for today's trust administrators. As Catherine C. Thompson pointed out in an article published in TRUSTS & ESTATES from February 1995,11 due to the increasing age of the population and the fact that many adult children do not live near enough to their parents to care for them personally, there is a growing need for trust officers who can provide services that will assist elderly clients and thereby put families at ease.

Moreover, creating a situation that allows an elderly person to live out his/her life with dignity has become a major challenge to many families and their trust administrators. LCPs can be of great assistance in these situations. For example, because of their training in rehabilitation, LCPs are aware of rehabilitation possibilities for the elderly that can help seniors make the kinds of "small gains," physically and/or mentally, which allow them to continue to live at home.12 Obviously, living at home has many psychological and financial advantages for a senior and those advantages need not be detailed here. LCPs also are aware, as suggested in George's case, that social interaction is important. "Training a person who is older and blind to cross the street has little meaning unless he/she has somewhere to go or someone to visit."13

LCPs also are aware that the needs! of the elderly are both sophisticated and simple. Many people may focus on the sophisticated medical needs and overlook the simple, non?medical services such as bathing, dressing, shopping and transportation, which can ease the elderly person's life, not only on a day-to-day basis, but on an hourly-to-hourly one, as well.14

Further, LCPs also are aware that it is generally the collapse of the elderly person's support system, and not a sudden change in his/her health, that sends these individuals into nursing homes. A well-managed support system not only identifies high-risk individuals before a crisis occurs, but coordinates all the care a client receives at one time so that care does not overlap. This makes the care more efficient and cost-effective. 15

Whatever the case, trust officers who make the effort to meet the needs of disabled or elderly clients by bringing in LCPs -and other people the LCPs recommend to address the needs of these clients may find unexpected rewards for their efforts. Of course more business may be referred to them because of the extra level of service they can offer; but trust officers who have used LCPs also note that their own anxiety levels decreased, their time was freed up to do the work for which they were trained, and they experienced genuine satisfaction in knowing that they had improved the quality of life for their clients and their clients' families.

Life Care Planning: Complementing The Trust Officer's Expertise

As is evident from the cases cited, a LCP's work clearly complements the work of the trust officer. It also should be clear that life care planning is a discipline quite distinct from that of trust administration. (This point may seem obvious, yet I have been told by a number of trust officers that before they became involved with clients requiring life care plans, they were simply unaware of the demands made by such cases and the expertise required to handle these cases effectively. In attempting to handle all elements of the cases themselves, they found themselves overworked, stressed-out, and unable to focus on their primary duties as financial adviser/planner.)

The University of Florida, working with the Rehabilitation Training Institute, was among the first to initiate an academic program that made life care planning a new discipline. Its 160 hours of postgraduate professional training study include course work dealing with catastrophic case management, multiple disabilities (such as the geriatric population, burns, cerebral palsy, multiple sclerosis, reflex sympathetic distrophy, etc.), vocational assessment, wage loss, spinal cord injuries,16 head injuries, and forensic rehabilitation applications. The rehabilitation professional must already be certified, registered and/or licensed in rehabilitation before being accepted into the program.

In addition, the program trains LCPs to maintain a holistic and objective approach when making any life-care analysis and decisions. The LCP must know how to look at every aspect of the disabled person's life, not just at an isolated problem.

The LCP's responsibilities often include communicating with the client, his/her family members, all care givers, clinical treatment teams and community resource people. Through this kind of liaison work, the LCP organizes an interdisciplinary team of experts. It is the team's responsibility to determine the best estimate of projected services and products for the most effective management of a specific case. The team's goal should be the same as the main goal of the life care plan - obtaining optimal care and quality of life in a cost-effective manner.

Consequently, the LCP uses cost projections based on pricing accurate to the geographic region in which the client will receive the service. This is important because costs vary considerably from area to area. For example, costs may be lower in a rural setting as compared to an urban one, or vice versa, depending upon the item. Prices vary from state to state, as well. In California, an L5300 Below the Knee Socket Prosthetic Leg costs, on the average, about $2,540, but in Maryland, the same prosthesis averages a cost of about $1,960.

Additional guidelines used in formulating cost projection include no automatic recommendations of either the most or least expensive equipment or service and no probability predictions contrary to accepted fact and literature. On the other hand, projections should consider the use of free or discounted services for which a client may be eligible, as well as the client's own desires and goals.17 In short, the effective life care plan should be like a blueprint that develops and uses long-term strategy.

In formulating a life care plan geared to meet the specific needs of an individual, the LCP uses specific software tools and a copyrighted format.18 These make it possible to analyze and outline individual needs, which could include any or all of the following:

educational/vocational needs

mobility requirements (e.g. wheelchairs, accessories and maintenance)

drug and medical supply needs

architectural modifications

home care or facility care

assistive technology needs

recreational needs

surgical intervention

aids for independent function

diagnostic testing/educational assessment

projected evaluations

LCPs are also are aware that needs of the elderly are both sophisticated and simple.

orthopedic equipment needs

home furnishings and accessories

potential complications

routine future medical care

psychiatric needs

Again, it is important to note that only a trained LCP can effectively analyze the needs of the client and that turning this task over to a LCP frees up the time of the trust administrator to do the job for which he/she is prepared. Chart 1, which is only one page out of a 53-page report from an individual's life care plan, demonstrates the complexity and specificity of the LCP's work.

Attorneys/Life Care Planners/Trust Officers: A Beneficial Triad Of Services

For some time now, attorneys, particularly those representing chronically or catastrophically disabled clients, have used the expertise of LCPs to strengthen their arguments for a truly realistic settlement. Attorneys experienced in the use of LCPs also encourage other attorneys to consider trust accounts with banks as an alternative to structured settlements with insurance companies using an annuity with fixed rates. Logic would suggest that a bank, through the use of the expertise of its trust officers, is more qualified than an insurance company to make the most of a client's trust.

Trust officers are in a unique position in these cases. They are not limited to fixed-rate investments. They can not only use LCP to determine the real needs of their clients, they also can recommend their LCP to the client's attorney to help the attorney achieve a proper settlement for the client. And while it is true that the bank may benefit from such recommendations, ultimately, it is the interest of the client which is best served.

Experienced attorneys also urge trust officers with disabled clients to use LCPs and offer the following key reasons for a trust administrator's use of a life care plan. Employing a life care plan:

Helps use money effectively by tailoring investments to client needs and assuring the most effective services and equipment.

Decreases the trust administrator's anxiety as to a game plan for the future.

Decreases the trust administrator's need to work outside of his/her expertise.

Decreasing the client's anxiety as to the future

Establishes a better, more effective relationship among all involved parties.

Managing a trust fund for a disabled or elderly client naturally can be a rewarding experience. But it is also a complex, challenging task. Happily for these clients, advances in medical, rehabilitational and psychological care have multiplied exponentially over the last few years. However, this multiplicity of care alternatives makes estate planning more demanding than ever before. A professionally prepared life care plan for your disabled or elderly clients can be a powerful tool with which to help you successfully manage their trusts.

End Notes

1. See Goldsmith, Susan A., "Understanding The Trust Department Business and Why They Need You: An Introduction," Geriatric Case Managers Journal, Sumer, 1993, PP.3,7 and 10. Goldsmith notes the taxing emotional involvement trust officers may experience: " Estate planning, asset management and probate work demands involvement in human issues. The issue of over?identification or "counter?transference" is prevalent within service?oriented professions, and often account administrators and their staff do not know they are blurring personal boundaries and becoming emotionally involved with customers in occasionally damaging ways." p. 7.

2. Welber, Joel S., Marsha Katz & Robert Goudeseune, "The Role of the Trustee in the Administration of a Trust for a Beneficiary with Developmental Disabilities," informational paper, Ann Arbor, MI, 199 1, p. 11. This paper provides excellent insights into the topic.

4. Plans for children with brain damage should be formulated as soon as the disability is detected. See Kitchen, Julia A., L. Stuart Cody & Paul M. Deutsch, Life Care Planning For The Brain Damaged Baby: A Step-By-Step Guide (Winter Park, FL: St. Lucie Press, 1989).

5. For more information concerning the need, ways and means to help integrate the developmentally disabled into society as a whole, see Wheeler, Jill, Transitioning Persons with Moderate and Severe Disabilities from Scbool to Adulthood & What Makes it Work? (Menomonie, WI: Materials Development Center, School of Education and Human Services, University of Wisconsin - Stout, 1987).

6. Ibid., p. 35.

7. Welber, Joel S., "The Use of Trusts to Compliment Essential Governmental Benefits In Residential Life Care Planning for Persons with Developmental Disabilities," informational paper, Ann Arbor, MI, 1995, p. 6.

8. Ibid., footnote #6, p. 17.

9. The unreliability of government funding is acknowledged in many sources, including Deutsch, Paul M. & Horace W. Sawyer, Guide to Rehabilitation (White Plains, NY: AHAB Press, 1994): "Legislation for Developmental services, Children's Med ical Services or other state funding pro grams may exist; however, funding may not be available to address all of the needs of the disabled child." p. 713-24. Guide to Rehabilitation is one of the rich est sources of information concerning all aspects of the rehabilitation field.

10. Respiratory Ailments are among the more common health problems suffered by the elderly. Diabetes is another common condition, one that sometimes leads to the need for amputation of a limb or limbs. See Kitchen, Julia A., L. Stuart Cody & Nancy G. Morgan, Life Care Planningfor the Ventilator Dependent Patient: A Step?by?Step Guide (Winter Park, FL: St. Lucie Press, 1990) and Weed, Roger 0. & Anne Sluis, Life Care Planning for the Ventilator Dependant Patient: A Step-by-Step Guide ( Winter Park, FL: St. Lucie Press, 1990) and Weed, Roger O. & Anne Sluis, Life Care Planning For The Amputee: A Step-By-Step Guide ( Winter Park, FL: St. Lucie Press, 1989)

11. Thompson, Catherine C., "The Role Of Care Managers and Social Workers In The Trust Field," TRUSTS & ESTATES, February, 1995.

12. Aging in America, David W. Corthell, ed. (Menomonie, WI: Stout Vocational Rehabilitation Institute, University of Wisconsin Stout, 1990), Chapter IV: "Independent Living and Aging/Disability," p. 63.

13. Ibid., p. 62.

14. Toran, MR., "Geriatric Case Management Comes of Age," The Case Manager, Convention Issue, 1995, p. 104. For an examination of the current services and lack of services to older persons, see Aging in America, David W. Corthell, ed. (Menomonie, WI: Stout Vocational Rehabilitation Institute, University of Wisconsin Stout, 1990), Chapter IV: "Independent Living and Aging/Disability, " pp. 79 1.

15. Toran, MR., "Geriatric Case Management Comes of Age," The Case Manager, Convention Issue, 1995, p. 106.

16. For insight into the ramifications of spinal cord injury, see Blackwell, Terry L., Roger 0. Weed & Anne Sluis Powers, Life Care Planning for Spinal Cord Injury (Athens, GA: Elliott & Fitzpatrick, Inc., 1994).

17. Zasler, Nathan D., "Physiatry and the Life Care Planner," Inside Life Care Planning, July-August 1995, p.9.

18. The software applied is "LCPStat" and may be obtained by contacting Randall L. Thomas, TecSolutions, Inc., P.O. Box 1347, Ridgeland, MS 39158. TecSolutions provides a series of software programs that facilitate the daily activities of Rehabilitation Counselors, Life Care Planners and Case Managers. Another software program useful to the Life Care Planner in determining employability, vocational potential and earning capacity, is the McCroskey Vocational Quotient System which includes the McCroskey Transferable Skills Program (MTSP), the McCroskey Test Pilot Program (McPlot) and the McCroskey Dictionary of Occupational Titles (McDot). These were developed by Dr. Billy J. McCroskey, Vocationology Inc., 8209 Halifax Court N., Brooklyn Park, MN 55443. These programs help determine a disabled client's Pre and Post-Injury Transferable Skills and Earning Capacity which in turn assists the Life Care Planner in determining the client's Economic Loss of Earning Capacity. These programs have been empirically tested and found to be both tellable and valid with several studies published in the peer-reviewed journal of Vocationology (Vol. 1-1, Fall, 1995).Pre and Post-Injury Earning Capacity estimates provided by the MTSP have an established Standard of Error Estimate of plus or minus $1.31/hr.

Reprinted courtesy of Intertec Publishing Corp.

Ronald T Smolarski (M.A., C.L.C.P, C.R.C, C.C.M., C.V.E., L.P.C, C.D.E. II, A.B.V.E., A.B.M.P.P.) is a certified life-care planner, vocational expert and rehab economist with Beacon Rehabilitation Services. He has 21 years of experience. He can be reached at 1-(800) 821-8463, ron@beaconrehab.com or www.beaconrehab.com. The author gratefully acknowledges the technical assistance provided by Ann Arbor trust attorney Joel S. Welber.