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by Mitzi K. Lauderdale, J.D., and Sandra J. Huston, Ph.D.


Executive Summary

  • Families with special-needs dependents face enormous barriers in planning for their future, including emotional, family, life quality, finances, work-life conflicts, and inadequate resources. With a shortage of planners focusing on families with disabled dependents, special-needs families need planners’ help more than ever.
  • Special-needs planning is similar to traditional planning, but is amplified by additional needs and considerations, such as the parents’ fear for the future of their child after their deaths.
  • Planning must be holistic. The special-needs plan requires accounting for multiple generations, balancing planning needs with maintaining necessary government benefits, and rethinking a needs analysis that considers both morbidity and mortality estimations.
  • The starting point of special-needs planning is a letter of intent that addresses the many emotional, social, and family issues. Helping the family identify their hopes and dreams for their disabled loved one allows an adviser to assess the family’s financial priorities, and may potentially reveal more about the family’s goals than they would have originally shared.
  • While all parts of a special-needs comprehensive plan are important, the other crucial component is the special needs trust, combined with a good estate plan.
  • The demand on planners can feel overwhelming because of the complex emotional and social issues. Some planners are well prepared to handle the psychological and social issues and participate in life planning to look at values, dreams, relationships, and life purposes; however, many planners are simply not comfortable practicing in that realm. To address this, planners should consider a holistic team approach, from an attorney and insurance specialist to a mental health professional or financial therapist, to assist in breaking through planning barriers.

Mitzi K. Lauderdale, J.D., is an assistant professor in the Department of Personal Financial Planning at Texas Tech University. She received a Juris Doctorate and a master’s in personal financial planning from Texas Tech University. She conducts research and community training in estate planning for special-needs families and co-wrote an estate planning and taxation textbook.

Sandra J. Huston, Ph.D., is an associate professor in the Department of Personal Financial Planning at Texas Tech University. She received a Ph.D. in consumer economics from the University of Missouri-Columbia. Her research interests focus on human capital specifically related to personal finance (financial literacy), the impact of using financial advice in household decision making, and the impact of financial sophistication on resource allocation within household portfolios.

Financial planning for families with special-needs dependents is characterized by unusually complex challenges. When defining special needs, disabilities cover a broad range of physical and cognitive issues, from mobility to Down’s syndrome (Graetz 2010; Sharpe and Baker 2007; Saposnek et al. 2005). With most special-needs diagnoses, parents must plan for partial or complete dependency extending throughout the child’s lifespan. They also require a plan that provides financial support for subsequent generations to provide continuity of care when one generation dies (Grassi 2008; Lauderdale and Huston 2012a; Nadworny and Haddad 2007).

A comprehensive special-needs plan, however, must encompass far more than the family’s financial aspects and legal planning matters. It must take into consideration the psychological and social issues (psychosocial) and family support needs that accompany planning for disabled dependents (Hoyt and Pollock 2003; Nadworny and Haddad 2007). This complexity of emotional, financial, and legal issues often deters parents from planning at all. Heller and Factor (1987) found that the majority of parents who have a child with a disability had no future financial arrangement for their child. More recent literature shows that adequate planning is still an impediment among special-needs families (Graetz 2010; Lauderdale et al. 2010; Smith and Tobin 1990). Lauderdale and Huston (2012a) found that fewer than four out of 10 special-needs families report having a plan. Of those that indicate having a plan, only 25 percent (10 percent of entire sample) have a plan that includes a special needs trust (SNT), a cornerstone of a sound financial plan for families with special-needs dependents.

Consequently, the guidance of financial planners is vital to families with a special-needs loved one. Of those families who use professional guidance, the majority (88 percent) has consulted with a financial adviser and has a plan that includes a special-needs trust, while less than 10 percent of families with no plan report having used professional advice (7 percent). Financial planners can, and do, make a difference when it comes to having a plan in place for special-needs families. There is a great need for more financial planners to get involved and assist with the needs of this growing population.

However, many financial advisers who don’t specialize in working with special-needs families feel overwhelmed working with them because of the complicated social and emotional dynamics with which planners may not be familiar. The result is a shortage of planners willing to provide comprehensive planning for these families. This paper focuses on highlighting the differences between traditional and special-needs financial planning models. In addition, it addresses concerns of working with this complex segment of the population by encouraging planners, with practices of all sizes, to adopt a team approach that can provide the additional legal and psychosocial support required to facilitate the planning process for special-needs families.

Challenges that Can Affect the Planning Process

Many psychosocial concerns require consideration and are often unique to each special-needs family. The impact of the diagnosis on the family varies based on the type of disability. Often, parents’ greatest fear for the future of their special-needs child is how care will continue after the parents are gone (Davis 2003; Lauderdale et al. 2010). Parental concerns arise regarding how their children will be financially supported, where they will live, who will take care of them, with whom they will socialize, and how they will maintain everything they are doing currently (Lauderdale et al. 2010). Other parental fears include the child’s financial independence (well being), employability, and the ability for the child to live independently (Davis 2003). Quality of life is also a great concern, especially regarding where and how the child will live.

Davis (2003) also suggested that older parents with deteriorating health face greater concerns with the need to plan. Most of these fears are justified: more than 75 percent of special-needs adults are unemployed (Grassi 2008), and a third of all households containing at least one family member with a mental disability are below the poverty threshold (The American Community Survey 2007). The emotional landscape of the parents further complicates these anxieties. Some have unrealistic expectations of the future of their child while many others harbor anger, grief, and guilt—all of which can hinder planning (Grassi 2008).

Lauderdale and Huston (2012b) discuss five major barriers to planning:

  1. Family concerns such as caring for aging parents, time shortage to spend with family, and impact on other dependents and marriage
  2. Quality of life
  3. Financial security for special-needs dependents
  4. Struggles with work-life conflicts
  5. Inadequate resources, including lack of government resources

Costs may arise from intervention strategies involving counselors, therapists, schools, and a multitude of health care providers; all of these expenses add to the traditional costs associated with caring for a child (Lauderdale and Huston 2012b).

Pressure for a parent to leave the labor market often arises when excessive appointments must be attended with therapists, doctors, and teachers; when care providers are not able to manage behavioral issues of the child; or when excessive illnesses remove the child from school, thus forcing parents to miss work to care for them. The decision to leave the labor market must be carefully balanced with the need to provide health care coverage (Graetz 2010; Heller and Kramer 2009; Grassi 2008; Sharpe and Baker 2007; Thomas 2005; Gould 2004).

Of particular concern is the parents’ marriage. Researchers agree that the divorce rate for parents with a special-needs child, reported to be as high as 90 percent, is substantially higher than for traditional families (Grassi 2008; Kraus 2005). Marital and other family relationships suffer intense pressure from the stress of raising a special-needs child (Sharpe and Baker 2007). Spouses often grow apart (Kraus 2005). Parents argue over issues concerning their special-needs child, such as treatment strategy for the child. They are encouraged to seek the help of professionals before engaging in long-term planning (Saposnek et al. 2005). In the event that marital problems persist and the marriage ends, financial planners should advise funding a special-needs trust before a divorce to avoid unnecessary financial battles and, more importantly, to ensure that the child is provided for throughout his or her life and upon death of the caregiver(s) (Kraus 2005).

Family and other social support, both financial and emotional, play an important role in providing for special-needs children. Planners frequently work with grandparents who are involved in providing social, emotional, and financial support. All relevant parties need to be appropriately integrated in the planning process to prevent catastrophic errors that can ultimately lead to the loss of social support and government financial support. This integration includes a proper understanding of the way to give gifts or leave inheritances to disabled loved ones. Maintaining the social support structure can be crucial to providing stability of care for the special-needs loved one (Nadworny and Haddad 2007). When developing the structure for the comprehensive support system, the planning process can benefit from the input of a mental health professional.

Traditional Versus Special-Needs Planning Models

Special-needs plans are similar to traditional plans, yet they are amplified by additional needs. The special-needs plan requires planning for multiple generations, balancing planning needs with maintaining necessary government benefits, rethinking a needs analysis taking into account morbidity and mortality estimations, and an increased consideration in psychosocial matters and planning barriers (Lauderdale and Huston 2012a). Psychosocial issues refer to the psychological and social factors that arise because of having to care for a dependent with special needs. For example: relationship stress, increased emotional responses, and parental burnout (Rodrigue, Morgan, and Geffken 1990).

Figure 1 depicts the similarities and differences between a traditional comprehensive and special-needs financial planning process.

MAR13 Lauderdale Figure 1

In our depiction, we consolidate traditional comprehensive planning into four major areas:

  1. Investments and cash flow: includes asset management, retirement planning, education planning, emergency fund planning, Social Security planning, and other savings planning
  2. Legal: includes estate-planning documents such as wills, trusts, powers of attorney, advanced medical directives, guardianship, and business entity ownership where applicable
  3. Taxes: includes income taxation strategies, gift taxation, estate taxation, charitable planning, and generation-skipping transfer taxation
  4. Risk management and insurance planning: includes employee benefits assessments, health insurance, life insurance, disability and long-term care, etc.

Like the traditional approach, a special-needs plan should be comprehensive in nature and include the standard financial planning considerations of investments/cash flow, legal, taxes, and risk management. But a special-needs plan should include at a minimum several additional legal and non-legal documents.

Two crucial components are a letter of intent and a special needs trust (SNT). The creation of an SNT requires the assistance of an attorney. The crafting of the letter of intent can be guided by a professional(s) and drafted by family members. The letter of intent becomes the organizing centerpiece of the plan, reflected in Figure 1, because many financial considerations stem from this document. Therefore, we add it as a fifth area below, along with additional issues to consider in the four traditional areas.

  1. Letter of intent: written by the client family and guided by the financial planner, mental health professional, attorney, or a combination to provide continuity of care for the disabled dependent
  2. Investments and cash flow: planning for multiple generations, lifetime supplement expense assessment, supplemental security income (SSI) or Social Security disability income (SSDI) for the disabled dependent, state benefit management, asset ownership limitations, residential planning and funding
  3. Legal: special needs trust, beneficiary designation issues, guardianship of an adult dependent, and compliance with benefit program requirements
  4. Taxes: additional available deductions, and gift and generation-skipping tax planning related to funding the SNT
  5. Risk management and insurance planning: Medicaid, and many times a permanent life insurance policy, is needed to fund an SNT

In addition to variations in the component structure of the plan, Figure 1 illustrates the communication and emotional differences that planners leading this process are likely to encounter. The broken line on the traditional comprehensive plan indicates that while there are some barriers to planning for typical clients, these barriers tend to be much more penetrable compared with the wall of denial or paralysis experienced by many special-needs families. Both time and the paralysis of not knowing where to begin act as significant barriers to planning (Lauderdale et al. 2010). Managing additional meetings with schools, counselors, therapists, doctors, government agencies, and family or other alternate care providers in addition to normal demands of work and family can consume a substantial portion of special-needs caregivers’ time.

The gray ring surrounding the financial planning components represents the psychosocial issues that need to be managed to adequately address and complete the financial planning process. Again, in comparison to the typical comprehensive client, the special-needs planning process is fraught with intertwined emotional and social issues. The financial planner needs to be aware of these issues so she or he can appropriately assess the accompanying financial implications. A financial planner who takes a typical approach with a special-needs client may find it daunting to swim through the seemingly endless pool of emotions and may feel more comfortable including a therapist to help navigate. The letter of intent is purposely depicted at the center of the planning process for special-needs families, as it provides the ideal starting point. Discussing a game plan for the letter of intent helps build understanding and trust, and assures the family that their special needs are understood and will be adequately addressed in planning.

The next section provides more detail on the letter of intent and SNT. Then, a team approach for planning will be discussed to help financial planners understand that they can provide much-needed services to special-needs families with the help of other professionals. Hopefully, this will reduce the barriers for financial planners so many more special-needs families can be properly assisted in planning for their futures.

Letter of Intent: Addressing the Psychosocial Issues

A letter of intent is necessary to address the many emotional, social, and family issues involved with a special-needs dependent. It also helps guarantee the success of the plan overall, and the special needs trust in particular. Also known as a special letter of instruction, a letter of intent is an important non-legal estate planning tool necessary to provide continuity of care in the event a parent is no longer able to care for a special-needs child, whether through death or incapability (Greenbaum 2007; Hoyt and Pollock 2003; Nadworny and Haddad 2007; Stevens 2002). Because parents are usually the experts on their child’s needs, they should compose a letter of intent that provides instructions to the guardian and trustee to guarantee the best continuity of care (Lauderdale and Huston 2012a; Moore and Landsman 2010).

This self-drafted document includes biographical, support, legal, financial, and other information. Biographical information of the child with disabilities typically includes personal demographics, personal and family medical history, current medical and health information, important daily living routines, emotional considerations, and personality traits. To maintain the dependent’s support structure, information must be included about family members, therapy plans, social and recreation information, professional support contacts, government care support, and contact information for friends.

Legal information on both the caregivers and the dependent is required and should include the location of documents such as wills, trusts, and powers of attorney, as well as information on guardianship plans, any potential inheritances to be received, and any final arrangements.

Financial information regarding the location and existence of bank accounts, insurance policies, government benefits, and the contact information for any financial advisers and government benefit agents also should be included. Other details one wishes to provide regarding hopes, dreams, and a vision for their dependent’s future should be incorporated into the letter of intent (Hoyt and Pollock 2003; Nadworny and Haddad 2007; Stevens 2002).

The detail required for a letter of intent often brings some of the psychosocial matters to the forefront, allowing a family to address them head-on, rather than implementing a plan and then realizing it is ineffective because of a psychosocial issue. This document is ever changing. It can range from a few pages to multiple binders, and it serves to facilitate a seamless transition (Etmanski, Collins, and Cammack 2002). Some professionals believe a letter of intent is a catalyst to encourage planning by demystifying the planning process and breaking it down into simple yet lengthy details (Lauderdale and Huston 2012a; Nadworny and Haddad 2007).

A letter of intent is a good place to begin assessing a client’s situation. Working directly with the family to identify their hopes and dreams for their disabled loved one allows an adviser to assess the family’s financial priorities, and may potentially reveal more about the family’s goals than they would have originally shared. As their concerns are aired, including an attorney to help articulate and appropriately address those concerns in the necessary legal documents is vital for the plan’s success.

Special Needs Trusts

A fundamental component of the comprehensive plan for special-needs families is a special needs trust (Lauderdale and Huston 2012a; Grassi 2008).

An SNT, also known as a supplemental-needs trust, can provide resource protection through management and a spendthrift shelter, allow for guardianship due to incompetence (either current or anticipated), and most importantly can prevent disqualification of government assistance due to asset ownership (Caudill 2009). SNTs come in a variety of fashions and must be tailored to each client’s situation. While SNTs play a crucial part in the planning process, do not be misled that an SNT is all that a special-needs family requires.

The planning for a special-needs child comprises two components: financial support for the child’s future and sustaining the child’s necessary social and emotional support (Lauderdale and Huston 2012a). While all parts of a special-needs comprehensive plan are important, the SNT, combined with a good estate plan, is crucial to fulfilling the financial needs of a disabled person. Depending on the family’s financial situation, the plan can be funded in a variety of ways; however, a trust is necessary to the plan’s proper implementation (Grassi 2008; Hoyt and Pollock 2003; Nadworny and Haddad 2007; Stevens 2002). Using an SNT is the only reliable method that ensures a person with disability access to his or her inheritance when necessary (Rhatigan).

SNTs are most commonly referred to as the “legal centerpiece” of a special-needs plan (Enea 2008; Lauderdale and Huston 2012a). While they are designed to control resources for the disabled individual who may struggle with management of assets, they are more importantly used to supplement existing government benefits (Rhatigan; Rosenberg 2000). SNTs are used to title assets in the name of the trustee rather than the name of a mentally or physically disabled individual, thus allowing them to still qualify for federal and state government means-based entitlements such as SSI and Medicaid.

SNTs are used in conjunction with estate planning documents. These and other concerns, such as the general durable power of attorney for financial affairs, durable medical power of attorney, and guardianship, are important to discuss with a qualified attorney. Wills, regardless of disability, should address matters of guardianship for minor children (Gitman and Joehnk 2007; Grassi 2008). All wills with the intent to transfer assets to a disabled individual, including wills for parents, grandparents, friends and others, should state that the gift is directed to the SNT and not the special-needs individual. Otherwise, government benefits may be taken away (Grassi 2008; Hoyt and Pollock 2003; Nadworny and Haddad 2007; Stevens 2002).

Generally, to maintain benefits, no gifts should be made outright to a special-needs person, including life insurance death benefits and assets such as retirement and payable-on-death (POD) accounts. This requires the coordination of other people’s estate plans when others are trying to help. An attorney team member is necessary to complete the SNT and other estate planning documents.

Holistic Planning: A Team Approach

Research shows that families and most financial and legal professionals lack the necessary information on regulations, rights, and benefits to make effective choices for special-needs children (Heller 2000; Smith and Tobin 1990). Dussault and Lauterbach (2002) predicted that special-needs planning would be one of the most demanded and rapidly growing sectors of practice. Yet few professionals today are trained in both the technical (financial and legal) and emotional aspects of planning (Lauderdale and Huston 2012a). As a result, special-needs families are underserved even though they comprise a large population of potential clients.

The demand on planners who do not specialize in this area can feel overwhelming because of the complex emotional and social issues. While some planners are well prepared to handle the psychosocial issues and participate in life planning to look at values, dreams, relationships, and life purposes (Kinder and Galvan 2007), many planners are not comfortable practicing in that realm. The planner does not have to be a therapist, but should be prepared to make referrals (Stein and Brier 2002). The answer to these challenges is to take a team approach.

Families often need the help of a combination of professionals who collectively understand the regulations, eligibility requirements, current tax laws, as well as the social and emotional issues associated with planning for this particular audience (Lauderdale and Huston 2012a). A team of professionals and family members can be engaged to create the right plan. The financial team minimally consists of a financial adviser and an attorney to draft necessary documents. Additionally, a planner may need to consult with a trustee or trust officer, a CPA or tax specialist, and an insurance specialist.

Holistic special-needs planners are well trained to provide a one-stop shop experience for special-needs families. They provide a multitude of services incorporating and coordinating financial services, legal planning, government benefit application and management, as well as life care plans.

Financial advisers and attorneys will pay particular attention to the interaction between Medicaid, Medicare, Supplemental Security Income (SSI), Social Security Disability Income (SSDI), and other income resources (Sharpe and Baker 2007). It is important to consult attorneys in advance of implementing other strategies to ensure that strategies do not inadvertently establish potential barriers to government benefits or estate planning objectives (Stone 2006).

In addition, the team or holistic planners cannot afford to overlook the social and emotional aspects. While all planners need to be cognizant of the circumstances surrounding planning decisions, they should consider working with a mental health professional to assist in this part of the planning process. Lauderdale and Huston (2012a) found that families with encouragement from a mental health professional to create a special-needs plan were the most likely to have an adequate plan, rather than encouragement by other professionals, themselves, or friends. The study also reinforced that having a lawyer or financial planner involved in the plan has a higher likelihood of creating an adequate plan. The study suggested that financial, legal, and mental health professionals play a substantial role in increasing the odds of ensuring that special-needs families have adequate plans. Therefore, the best combination of professionals to work alongside the special-needs family is a financial planner, attorney, and mental health professional.

Norton and Drew (1994) also suggested that financial counseling and family counseling services should be made available to families coping with special needs. It might be useful to include a financial therapist to assist with both family and financial counseling. Financial therapy is the study of cognitive, emotional, behavioral, relational, economic, and integrative aspects of financial health (Grable, McGill, Britt 2010). Financial therapists are uniquely positioned to lead the special-needs planning process through a combination of encouraging clients to plan and assisting with the planning process. A financial therapeutic approach can help to bridge the gap that exists between the financial, legal, and mental health professions and address the barriers that often prevent special-needs families from initiating and completing the planning process.

With the number of professionals involved, one might think this type of planning is only for high-net-worth clients, but planning is accessible to most. Just as in traditional planning, special-needs planners charge in a variety ways including hourly, per service, by assets under management, or as a package deal. Also like traditional planning, the costs vary based on the complexity of the client’s situation. Under certain circumstances, professionals work at discounted rates, pro bono, or work out payment plans to allow families to get on their feet. Special-needs families that qualify for SSI benefits may use that money to pay for professional planning services.

When a financial planner helping a special-needs family encounters a particularly complex planning case, it would be appropriate for the planner to refer to or consult with a planning firm that specializes in comprehensive special-needs planning for recommendations. In an effort to provide a broader impact, some holistic planners offer alternatives such as back-office planning for financial advisers.

Key Findings and Conclusion

Most special-needs families are not properly planning for their children’s futures and the consequences are potentially catastrophic (Lauderdale et al. 2010). While planning for the future of special-needs loved ones has always been a necessity, it’s paramount today because of the higher incidence of diagnosed disabilities, longer life spans resulting from medical advancements, increasing long-term care costs, and the reduction of government support (Erickson and Lee 2008; Hoyt and Pollock 2003; Lauderdale and Huston 2012b; Nadworny and Haddad 2007; Saposnek, et al. 2005).

Emotional and legal issues complicate creating an adequate comprehensive plan. Financial advisers can begin to address the concerns particular to each family by forming a team of legal and mental health professionals to work closely with families while preparing a suitable plan. Special needs trusts, or SNTs, remain vital to planning for disabled individuals to protect government benefits eligibility, manage assets, and provide care continuity when guardianship is deemed necessary (Stone 2006). For keeping the social and emotional consequences to a minimum, letters of intent are also valuable tools to help transition care providers with as little stress on the special-needs child as possible.

Financial planners can increase their accessibility to special-needs families by preparing themselves to address the technical and emotional challenges through a holistic team approach.
While an SNT is necessary in almost all cases, there is much more to special-needs planning than creating a plan that includes an SNT. A letter of intent—the ideal starting point for the financial planner to inform the financial components within the planning process, and collaboration with mental health and legal professionals—will greatly enhance the effectiveness of the services the financial planner is able to provide special-needs clients.

Though the financial plan for a special-needs family is an amplified form of a traditional plan, the team of professionals is necessary for addressing the social and emotional issues particular to each family. Addressing such concerns directly affects the ultimate form and adoption of the plan designed specifically for families with special-needs dependents.

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