Providing for a Child With Special Needs: The Importance of Declaring Your Intentions (Sponsored Content)

The “Letter of Intent” is an important part of a comprehensive estate plan for parents of a special needs child. It provides those who will carry out a parent’s wishes with the context they need to fully apply the instructions laid out in wills, guardianship and trust documents.

What Would a Parent Do?

For people guiding the care of a special needs child in the absence of the child’s parents, this is not as much a philosophical question as it is a daily challenge: How can a surrogate caregiver make a child’s life most like the life the parents had desired? You can help your designated surrogates perform that task by spelling out your vision in a letter of intent and giving copies of that letter to important people in your child’s life, both those who are actively involved now and those who might be called upon in the future.

Topics to Cover

While there is no single right way to create a letter of intent, it may help to start by recognizing that you could be speaking to people who may not have the opportunity to ask follow-up questions for clarification or amplification. In that light, you can begin your letter by setting the scene for your readers in broad strokes: Describe your vision for your child’s life; Lay out your understanding of your child’s talents, capabilities and interests; And highlight your guiding principles for child-rearing in general as well as for providing special-needs care and support. This can provide future caregivers with valuable context for specific instructions. And it will help set the tone for the more specific elements of your vision to follow.

After you introduce your intentions, you should address each of these topics in detail as they relate to your child’s needs and your expectations:

Family life, significant relationships and important contacts. Think about all of the immediate and extended family relationships your child is exposed to today, such as those with siblings, grandparents, aunts and uncles and cousins. What do you do to support those relationships at present (Holiday visits? Shared vacations? Sleep-overs? Extended family dinners?), and how would you like your surrogates to do so in the future? Also consider relationships with neighbors, friends, friends’ parents and others outside your family circle. You should identify relationships you think are worth maintaining and outline practical maintenance steps for your surrogates. Also consider the different kinds of professionals in your child’s life, including teachers and classroom aides, tutors, therapists and clinicians. Some of these relationships may transcend boundaries and could add value to your child’s life if they were continued.

Education—current plans and future goals. If your child is receiving special services from a public school district, he or she is likely to be covered by an Individualized Education Program, or IEP. IEPs are usually created only after a great deal of discussion involving parents, educators and independent experts. IEPs are generally revisited yearly and revised as circumstances change. You can facilitate future IEP discussions by communicating your procedural tactics and objectives to your surrogates. (Keep in mind that a designated surrogate who was not previously involved in the IEP process may also benefit from basic background information on the specialized language and procedures involved.)

Your letter of intent should also look beyond the IEP process by addressing how far on the educational ladder you see your child progressing. Higher education or conservatory training may be realistic aspirations. How do they fit with your vision for your child? What about technical training and commercial skills development—what roles do you think they might play? Do you have any specific schools, programs or vocational directions in mind? What about any preferences your child may express—what weight should they be given? All of these questions can be addressed in a letter of intent, along with suggested deployment of any discretionary financial resources.

Residence and living arrangements. The top three priorities for special needs children, like almost everyone else, are: Location! Location! Location! Your letter of intent should communicate the important parameters for the choice of location: proximity to friends and family and accessibility to resources such as schools, libraries, recreation, medical care and therapy. You could also discuss your beliefs about independent living and your child’s capability for managing his or her daily life.

Employment and occupational training plans. Many parents have strong opinions about occupational outcomes for their children. Your letter of intent is your forum for outlining your intended outcome and showing a path to achieve it. Many children develop strong opinions about their own futures. Some parents use the process of drafting a letter of intent to build a consensus with their child and demonstrate their support for their child’s choice of direction.

Management of behavior. Parents should articulate the principles they follow in routine matters of child rearing and discipline. This discussion could include any behaviors you think might need to be watched especially closely. It could also include any forms of direction you’ve learned to be particularly effective or ineffective with the child. If you have explicit preferences about sanction and punishment, you could spell them out.

Management of chronic conditions. Many children have strong relationships with their pediatricians, dentists, clinical specialists and therapists. You can use your letter of intent to show how those relationships can be supported and sustained in your absence. You should discuss how you would adapt your child’s care plans as circumstances change, and how you would take account of your child’s preferences. Also, if you think it may be relevant to your child’s circumstances, you could outline your beliefs and preferences for the possibility of heroic and experimental medical interventions, and the potential need for extraordinary life-saving measures.

Social and recreational life of the child. Some children need significant control and direction over matters involving their friendships and recreational activities. If your child is one of them, you could outline the principles you would follow if you were in control. If you expect that your child will be able to assume greater responsibility in the future, you can outline how you might create a transition plan. If your child is already capable of significant self-management in any area, you can endorse his or her autonomy.

Religious and spiritual life of the child. You should articulate your preferences for your child’s religious practices and observances. You can also put forth your desires for future religious education. And as in other areas, if you give your child any autonomy in this area, you can signal your support for your child’s preferences and expressions.

Other Considerations

Here is a summary of other points to consider about letters of intent:

Share drafts of your letter with potential caregivers and surrogates. Assess their willingness and ability to follow the direction you desire and negotiate resolutions to any differences of opinion in order to reach consensus for a course of action.

Create multiple copies of your letter with original signatures. Leave copies with anyone who has significant responsibility for the areas of concern covered in the letter. You should also leave copies with your estate lawyer and with anyone with fiduciary responsibility over trust or estate assets.

While the letter of intent may not be a legally binding part of your estate plan, its provisions and expressions should be consistent with the mandates you’ve expressed in trust, guardianship and estate documents. Some experts also suggest that your signature on the letter be formally witnessed and notarized.

You should review your letter of intent periodically to ensure that its expressions address current circumstances and remain consistent with your will, trust deeds and other estate documents.

Many parents make a concerted effort to involve their child (to the extent he or she is capable) in the process of creating the letter of intent. Some parents have also extended the concept to create letters of intent covering nondisabled children as well, finding that it opens constructive channels of communication across the family.

There is an important point to keep in mind — effective plans for special needs children may require financial wherewithal to support their declarations of intent. I have tools that can help you draw up an effective financial plan to sustain your intentions; among them, a work sheet designed to help you develop a realistic budget.

Ultimately, creating a meaningful letter of intent to guide the care of your special needs child is an intricate task, one in which you must weigh a host of competing priorities. I can help you evaluate the demands and reach a workable solution.


If you’d like to learn more, please contact William R. Zeuner.

Article Written By: Wealth Management Systems, Inc.
Courtesy of: William R. Zeuner CFP®, Financial Advisor
Branch Name: Morgan Stanley Wealth Management – West Conshohocken PA
Phone Number: 610-260-8621

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