Guidance for Future Guardians and Trustees

Brian Rubin
Brian Rubin & Associates
1110 West Lake Cook Road, Suite 165
Buffalo Grove, IL 60089-1997
(847) 279-7999
Fax: (847)279-0090
Toll Free: 1 (866) To-Rubin
  Reprinted with the permission of the author

The following is intended to be a guide to writing your own "Information Letter" to your chosen future Guardians & Trustees. It includes everything I could think of that my fellow parents of a child with a special needs might put in such a letter. Please don't limit yourself to my suggestions. Not every item will be applicable to your situation. The purpose of the Letter is to provide personal information about caring for your child, some of which is permanent & much of which will change over the years. The letter is therefore a "living" document, that must be periodically reviewed & revised when necessary. This Letter should be the "cover" document in a folder containing all relevant information about your child. Remember to date the letter! I would appreciate your sharing with me any suggestions on how I may be able to improve upon this guide for parents.
General information:
List the both parents' full legal names, other names used, Social Security numbers, complete addresses, phone numbers for home & work, county or township, dates of birth, places of birth, city/town/country where raised, fluent languages, religion, race, blood type, number of sisters, & number of brothers. Indicate whether or not U.S. citizens. If available, attach a copy of birth certificate.
Marital status:
Indicate the parents's marital status. If they are currently married, list the date of that marriage, the place the marriage took place, & the number of children from that marriage. Also list the dates of any previous marriages, names of other spouses, & names & birth dates of children from each marriage. If available, attach copies of marriage certificates, birth certificates, & divorce papers.
List the complete names of the both parents' siblings & parents. For those still living, list their addresses & phone numbers, as well as pertinent biographical information. Again, if available, attach copies of all birth & death certificates.
List the full name of your son or daughter with special needs. Also list the name he or she likes to be called.
List your child's Social Security number, complete address, county or township, telephone numbers for home & work, height, weight, shoe size, & clothing size.
More details:
List your child's gender, race, fluent languages, & religion. Indicate whether your child is a U.S. citizen.
List your child's date & time of birth, as well as any complications. List your child's birth weight & place of birth, as well as the city/town/country where he or she was raised. Attach a copy of your child's birth certificate.
List the complete names, addresses, & phone numbers of all sisters & brothers. Which ones are closest to the person with a disability... both geographically & emotionally? Attach all relevant birth, death, & marriage certificates.
Marital status:
List the marital status of your son or daughter. If married, list the spouse's name, his or her date of birth, the names of any children, & their dates of birth. Also list any previous marriages as well as the names, addresses, & phone numbers for the spouses & children from each marriage. Attach documentation of any marriage &/or divorce.
Other relationships:
List special friends & relatives (including addresses & phone numbers) that your child knows & likes. Describe the relationships. These people can play an invaluable role, especially if the trustee resides out-of-state.
Indicate whether your child has been declared incompetent (adult disabled person) & whether any guardians have been appointed. List the name, address, & phone number of each guardian & indicate whether that person is a guardian of the person or guardian of the estate, plenary or limited. Attach copies of all court documents related to any guardianship proceeding. Attach copies of Short Term & Standby Guardian documents.
If successor guardians have been chosen, list their full names, addresses, & phone number. Even if your child has no guardian, it is often wise to state in the Letter your wishes about who you want to act as guardian if one is needed in the future. Make sure you have spoken with them. This information will also be in your wills & your Standby Guardian Designation.
List the people, in order, who you foresee acting as advocates for your child after your death. Make sure you have spoken with them. Elaborate as to, or explain, any special knowledge or experience that these individuals may possess.
Indicate that you have set up a Discretionary Supplemental Needs Trust for your child & list the full names, addresses, & phone numbers of all the trustees. Advise them to contact me as to any questions in regard to the Trust. Also indicate the location of the original document.
Representative payee:
Indicate whether your son or daughter has or needs a representative payee to manage public entitlements, such as Supplemental Security Income or Social Security.
Power of attorney:
If anyone has a durable power of attorney for property &/or health care for your son or daughter, list the person's full name, address, & phone number. Attach copies of the powers & also indicate the location of the originals.
Final arrangements:
Describe any arrangements that have been made for your child's funeral & burial. List the full names of companies or individuals, their addresses, & phone numbers. Also list all payments made & specify what is covered.
In the absence of specific arrangements, indicate your preferences for cremation or burial. Should there be a synagogue or church service? If the preference is for burial, what is the best site? Should there be a monument? If cremation is the choice, what should be done with the remains?
List the main diagnoses for your son or daughter's condition, such as autism, cerebral palsy, Down syndrome, epilepsy, impairment due to age, learning disorder, PDD, undiagnosed developmentally disabled, mental retardation, neurological disorder, physical disabilities, psychiatric disorder, or an undetermined problem.
Indicate the seizure history of your son or daughter; no seizures; no seizures in the past two years; seizures under control; seizures in the past two years, but not in the past year; or seizures currently. Does anything act as a "trigger" for increased seizure activity?
Indicate your child's intellectual functioning level (include any documented "label" — mild, moderate, severe, profound, undetermined, etc.). If helpful, give actual examples. Give your opinion as well as that of others.
Indicate the status of your child's vision: normal, normal with glasses, impaired, legally blind, without functional vision, etc. List the date of the last eye test & what was listed on any prescription for eyeglasses. Provide the name, address, & phone number of your child's eye doctor. Tell how your child tolerates &/or reacts to visits to the eye doctor.
Indicate the status of your child's hearing: normal, normal with hearing aid, impaired, deaf, etc., & any other relevant information.
Indicate the status of your child's speech: normal, impaired, yet understandable; requires sign language; requires use of communication device; non-communicative, etc. If your child is non-verbal, specify the techniques you use for communication. Provide information on equipment currently used, used in the past, tried but no longer used, etc.
Indicate the level of your child's mobility: normal; impaired, yet self-ambulatory; requires some use of wheelchair or other assistance; dependent on wheelchair or other assistance; without mobility, etc. Provide information on equipment currently used, used in the past, tried but no longer used, etc.
List your child's blood type & any special problems concerning blood. If you have "card" or "documentation", attach it.
List the type, amount, & policy number for the medical insurance covering your son or daughter. What is included in this coverage now? Indicate how this would change upon the death of either parent. Make sure you include Medicare & Medicaid, if relevant.
Current physicians:
List your child's current physicians, including specialists. Include their full names, types of practice, addresses, phone numbers, the average number of times your child visits them each year, the total charges from each doctor during the last year, & the amounts not covered by a third party, such as insurance (including Medicare & Medicaid).
Previous physicians:
List their full names, addresses, phone numbers, the type of practice, & the most common reasons they saw your child. Describe any important findings or treatment. Explain why you no longer choose to consult them.
List the name, address, & phone number of your child's dentist, as well as the frequency of exams. Indicate what special treatments or recommendations the dentist has made. Also list the best alternatives for dental care in case the current dentist is no longer available. Also provide information on how your child reacts to dentist visits & any necessary preparation for the visit.
Nursing needs:
Indicate your child's need for nursing care. List the reasons, procedures, nursing skill required, etc. Is this care usually provided at home, at a clinic, or in a doctor's office?
Mental health:
If your child has visited a psychiatrist, psychologist, or mental health counselor, list the names of each professional, the frequency of visits, & the goals of the sessions. What types of therapy have been successful. What types have not worked?
Does your son or daughter go to therapy (physical, speech, or occupational)? List the purpose of each type of therapy, as well as the name, address, & phone number of each current therapist. Also list prior therapists & explain why they are no longer being used. What assistive devices have been helpful? Has an occupational therapist evaluated your home to assist you in making it more accessible for your child?
Diagnostic testing:
List information about all diagnostic testing of your son or daughter in the past: the name of the individual &/or organization administering the test, address, phone number, testing dates, & summary of findings. How often do you recommend that diagnostic testing be done? Where? Attach documentation.
Genetic testing:
List the findings of all genetic testing of your child & relatives. Also list the name of the individual &/or organization performing the tests, address, phone number, & the testing dates. Attach documentation. Also list where given & by whom.
List the type & dates.
List all childhood diseases & the date of their occurrence. List any other infectious diseases your child has had in the past. List any infectious diseases your child currently has. Has your child been diagnosed as a carrier for any disease?
List all allergies & current treatments. Describe past treatments & their effectiveness.
Other problems:
Describe any special problems your child has, such as bad reactions to the sun or staph infections if he or she becomes too warm.
Describe any helpful hygiene procedures such as cleaning wax out of ears periodically, trimming toenails, or cleaning teeth. Are these procedures currently done at home or by a doctor or other professional? What do you recommend for the future?
List all operations & the dates & places of their occurrence, name or names of physicians involved, etc. Attach documentation.
List any other periods of hospitalization your child has had. List the people you recommend to monitor your child's voluntary or involuntary hospitalizations & to act as liaison with doctors.
Birth control:
If your son or daughter uses any kind of birth control pill or device, list the type, dates used, & doctor prescribing it.
Does your son or daughter need any adaptive or prosthetic devices, such as glasses, braces, shoes, hearing aids, or artificial limbs?
List all prescription medication currently being taken, plus the dosage & purpose of each one. Describe your feelings about the medications. List any particular medications that have proved effective for particular problems that have occurred frequently in the past & the doctor prescribing the medicine. List medications that have not worked well in the past & the reasons. Include medications that have caused allergic reactions.
List any over-the-counter medications that have proved helpful, such as vitamins or dandruff shampoo. Describe the conditions helped by these medications & the frequency of use.
Indicate whether your child needs someone to monitor the taking of medications or to apply ointments, etc. If so, who currently does this? What special qualifications would this person need?
Does your child need someone to procure medications?
If your child has a special diet of any kind, please describe it in detail & indicate the reasons for the diet. If there is no special diet, you might want to include tips about what works well for avoiding weight gain & for following the general guidelines of a balanced, healthy diet. You might also describe the foods your child likes best & where the recipes for these foods can be found, as well as foods to avoid.
Describe your son or daughter's current living situation & indicate its advantages & disadvantages.
Describe past living situations. What worked? What didn't?
Describe in detail any plans that have been made for your son or daughter's future living situation. Describe your idea of the best living arrangement for your child at various ages or stages. Prioritize your desires. For each age or stage, which of the following living arrangements would you prefer?
A relative's home (Which relative?)
Supported living in an apartment or house with supervision
A group home with other residents
A state institution (Which one?)
A private institution (Which one?)
Parent-owned housing with supervision
Housing owned by the Discretionary Supplemental Needs Trust with supervision
Size: Indicate the minimum & maximum sizes of any residential option that you consider suitable.
Does the residence need to be adapted with ramps, grab bars, or other assistive devices?
List the types of places that would need to be conveniently reached from your child's home. Include favorite restaurants, shopping areas, recreation areas, libraries, museums, banks, etc.
Describe your child's current Individual Education/Program Plan.
Current activities:
Describe an average daily schedule. Also, describe activities usually done on "days off."
Discuss thoroughly whether your child needs someone to monitor or help with the following items:
Self-care skills (personal hygiene/dressing).
Domestic activities like housekeeping, cooking, shopping for clothes, doing laundry, or shopping for groceries & cleaning supplies.
Transportation for daily commuting, recreational activities, & emergencies.
Reinforcement of social & interpersonal activities with others to develop social skills.
Other areas.
Care givers' attitudes:
Describe how you would like care givers to treat matters like sanitation, social skills (including table manners, appearance, & relationships with the opposite sex). What values do you want Care givers to demonstrate?
Describe how you best reinforce your son or daughter's self-esteem, discussing how you praise & realistic goal setting.
Sleep habits:
How much sleep does your son or daughter require? Does he or she have any special sleep habits or methods of waking up?
Personal finances:
Indicate whether your son or daughter needs assistance with personal banking, bill payments, & budgeting. If so, how much help is needed?
Indicate whether you recommend a personal allowance for your son or daughter. If so, how much? Also, list your recommendations about supervision of how the allowance is spent.
List the schools your child has attended at various ages & the level of education completed in each program. Include early intervention, day care, & transition programs.
Current programs:
List the specific programs, schools, & teachers your son or daughter has now. Include addresses & phone numbers.
Estimate the grade level of your son or daughter's academic skills in reading, writing, math, etc. List any special abilities.
Describe the type of educational emphasis (such as academic, vocational, or community-based) on which your son or daughter currently concentrates. What educational emphasis do you think would be best for the future?
Describe the extent that your child has been in regular classes or schools during his or her education. What are your desires for the future? What kinds of undesirable conditions would alter those desires?
Describe your son or daughter's current day program &/or job.
Describe past experiences. What worked? What didn't? Why?
Discuss future objectives. Prioritize your desires.
Indicate to what extent, if any, your son or daughter needs assistance in searching for a job, in being trained, in becoming motivated, & in receiving support or supervision on the job.
Structured recreation:
Describe your son or daughter's structured recreational activities. List favorite activities & the favorite people involved in each activity.
Unstructured activities:
What are your child's favorite means of self-expression, interests, & skills (going to movies, listening to music, dancing, collecting baseball cards, painting, bowling, riding a bicycle, roller skating, etc.)? List the favorite people involved in each activity.
Describe your son or daughter's favorite vacations. Who organizes them? How often do they occur, & when are they usually scheduled?
If your son or daughter participates in a fitness program, please describe the type of program, as well as details about where & when it takes place & who oversees it.
List the religion of your son or daughter, if any. Indicate any membership in a particular church or synagogue. List or indicate your child's involvement.
List any ministers, priests, or rabbis familiar with your son or daughter. Include the names of the churches or synagogues involved & their addresses & phone numbers. Also indicate how often your child might like to be visited by these people.
Estimate how frequently your son or daughter would like to participate in services & other activities of the church or synagogue. Indicate how this might change over time. Also describe any major, valued events in the past.
Please list the rights values that should be accorded your son or daughter. Here are some examples of what you might list.
To be free from harm, physical restraint, isolation, abuse, & excessive medication.
To refuse behavior modification techniques that cause pain.
To have age-appropriate clothing & appearance.
To have staff, if any, demonstrate respect & caring & to refrain from using demeaning language.
Give an overview of your child's life & your feelings & vision about the future. Describe anything else future Care givers & friends should know about your son or daughter.
Provide information on organizations that have been of help to you, such as support groups, advocacy groups, & organizations that might be of help to your Trustees & Guardians. Be sure to provide individual names, telephone numbers, addresses, etc. Describe how these groups have or may have helped you. Likewise, provide information on what groups to avoid ... not to use or join, & why.
List the total assets your child has as of this date. Indicate how those assets are likely to change — if at all — in the future. Specify if these assets are in a Discretionary Supplemental Needs Trust or otherwise.
Cash income:
List the various sources of income your son or daughter had last year. Include wages, government cash benefits, pension funds, trust income, & other income. this might include Social Security, Social Security Disability Income (SSDI), or Supplemental Security Income (SSI).
Services & benefits:
List any other services or benefits your child receives. These might be services for children with physical impairments, developmental disability services, clinics sponsored by support groups, early periodic screening, diagnosis & treatment, employment assistance, foods stamps, housing assistance, legal assistance, library services, maternal & child health services, Medicaid, Medicare, Project Head Start, special education, Title XX service programs, transportation assistance, or vocational rehabilitation services.
Indicate whether any services or benefits are needed but are not being received by your son or daughter. Indicate whether plans exist to improve the current delivery of services or to obtain needed benefits.
List all expenses paid directly by your child in various categories, such as housing, education, health care, recreation, vocational training, & personal spending. List all expenses paid directly by parents, guardians, or trustees in various categories. List estimates of all expenses paid by third parties, such as insurance companies paying doctors directly or Medicaid paying for residential services.
Indicate how your child's financial picture would change if one or both parents died. Be sure to list any additional cash benefits to which your child definitely would be entitled. Also list any cash benefits for which your child might be eligible.
Attach a copy of the cover page & table of contents of your estate plan. Provide full names, addresses, & phone numbers of all your professional advisors. Provide the location of your original wills, trusts & related documents, if not included with the letter.
Provide copies of all insurance policies that will fund, directly or indirectly, the Discretionary Supplemental Needs Trust of your child.

"We all wish that our child with 'special needs' will have a long, happy & enjoyable life, but that we live at least one day longer. As difficult as it is to think about dying before our 'special' child, we must! We must plan to assure that our child remains qualified or able to qualify in the future for government benefits such as S.S.I. & Medicaid, & to protect any 'inheritance' from claims of the government for reimbursement for benefits provided to our child prior to our death. State of Illinois Public Act 87-311, which became effective September 6, 1991, allows our children's inheritances to supplement, rather than supplant or replace government benefits if our wills & trusts are written properly."

  Revised: July 12, 2002.