Guidance & Information Article




Why do it, when to do it, what it should include…

Brian Rubin is an Illinois attorney and the father of a thirty year old son with autism. He has practiced law since 1976. His firm’s practice is limited to special needs legal and future planning for his fellow families of individuals with intellectual disabilities, developmental disabilities, and/or mental illness.  He is Vice President of the Arc of Illinois, Co-Chair of the State of Illinois Autism Task Force, and past Chairman of the State of Illinois Advisory Council on Developmental Disabilities. Brian serves on the Special Needs Law Section Steering Committee of the National Academy of Elder Law Attorneys, and also serves on the Board of Directors of the Special Needs Alliance, the national, non-profit organization of attorneys committed to helping individuals with disabilities, their families, and the professionals who represent them.

As parents of a child with special needs, you possess a vast amount of information and history about your child that no one else possesses. You have your thoughts and wishes for your child’s future in your head. You know, in your heart of hearts, that no one else can truly understand your concerns, worries, and fears for what will happen to your child after you are gone.

You wish that your child with special needs will have a long, happy and enjoyable life. However, you pray that you live at least one moment longer than your child, so that you will not have to place the responsibility of caregiving upon others. You hope that you will always be there for your child.

As difficult as it is, you must consider the possibility that you may die before your child, or that you may become unable to care for your child during your lifetime, leaving the responsibility to others, whether court-appointed guardians, trustees of special needs trusts, trust advisors, trust protectors, and/or members of your child’s micro board or other committee. (For purposes of this article, I will refer to all of those individuals, collectively, as the “future team.”)

How do you communicate to this future team all that you wish them to know? How do you inform and educate this future team about your concerns, desires, hopes, wishes, and, yes, prayers as to the future life of your child?

Out of necessity, you have learned, over the years, how to navigate the complex maze of special education services available through your respective state programs, SSI, SSDI, Medicaid, and Medicare. However, the members of your child’s future team may know little about these matters, little about the battles you have won and lost, of the dead ends and road-blocks that you may have encountered. After all, they have been busy with their own lives and concerns. Are they prepared to step into your shoes? To ensure the best for your child and your team, you have an obligation, a duty, to educate your future team now, and to leave a road map for the future.

You can’t ask the members of your future team to accompany you to every event and every meeting. How do you provide your future team members with the information and guidance that they need?

Since memories are faulty, many parents choose to reduce this information and guidance to writing, in a document that is updated periodically. Often such a document is referred to as a “letter of intent.” I choose to refer to it as “guidance and information” for the future team. There are many samples of such documents on the internet. Use any form you find as a guide, and prepare your own document on your own computer. That way, you can revise the document periodically, save it, and forward it.

What topics should be addressed in your document of guidance and information? First, the document should include a brief list of bullet points covering the essential items your team would need to know immediately in order to care for your child in the first 24 to 48 hours after you have passed away or become incapacitated. I refer to this as the executive summary. Next to some of the bullet points, you may want to place a note referencing more complete information on a subsequent page. While the staff who provides support for your child may know your child very well, they can get sick, go on vacation, retire, or quit, and these bullet points will be very, very important for fill-in or new staff, as they will for other members of the future team.

Consider including in this executive summary:

1.      The time the bus comes – both for pickup and drop-off. (Include the driver’s name and contact information.)

2.      Teachers’ and aides’ names, contact information, and your comments about them.

3.      Employers’/supervisors’ names, contact information, and your comments.

4.      Agencies’/service providers’ contact information.

5.      Names and contact information for doctors and other important medical personnel.

6.      Current medicines, dosages, and location (including locations of prescriptions and pharmacy).

7.      Medicaid, SSI, SSDI, and Medicare information. Provide both parents’ social security numbers in addition to your child’s number.

8.      Documentation of any private, employer, VA, or other group health insurance that covers your child. (Photocopy front and back of insurance cards.)

9.      Location of calendar showing your child’s scheduled activities for the week.

10. Important routines.

11. List of buzz words to say or not say; suggestions on how to respond to problematic behavior.

12. Suggestions on ways to explain to your child what has happened, that is, your passing or incapacity.

Every time the document is revised, start with the date that it was prepared, and by whom it was prepared. Depending on your child’s abilities, consider including your child in the process. You may also want to include your other children, even if they are too young to be trustees or guardians. I suggest reviewing and revising this document at least every year around your child’s birthday, if not more often.

In addition to the bullet points, the document should include more complete information and documents about your child, which you should keep current. The following list is comprehensive, and will take time. Don’t be overwhelmed! Start with what you can manage. You can add to it as time goes on. A thorough document would include:

1.      Legal name and any nicknames (noting your child’s preference).

2.      Date and place of birth (noting the attached birth certificate).

3.      Height, weight, clothing sizes, shoe size as well as the location of clothing, including coats, hats, shoes and gloves.

4.      Color of hair and eyes (attach a current photograph).

5.      Documentation regarding Medicaid waiver programs in which your child participates.

6.      A list of all relevant accounts with financial institutions, whether titled in your child’s name, the name of the trustee of your child’s special needs trusts, the name of a representative payee, or a custodial account.

7.      Contact information for the trustee of any special needs trust; if you are a trustee, the successor trustee(s)’ contact information.

8.      List of personal care needs for which your child needs assistance.

9.      Daily personal care routine for your child.

10. A description of your child’s favorite clothes (including hats, shoes, etc.).

11. A copy of your child’s voter registration card, if applicable.

12. A copy of your child’s driver’s license, if applicable.

13. Child’s blood type.

14. Current diagnoses, as wells as the history of prior diagnoses, including the names of the physicians who made them.

15. List and history of allergies.

16. List of current medications (attach prescriptions) with history of prior medications, changes in dosages, including dates, when taken, prescribed by whom, when and why discontinued. Include generic names if the doctor is OK with substitution for brand names. List side effects. Include the history of combination of medications, that is, the cocktails. Make sure to remember to list medications and/or combinations of medications to avoid, and why.

17. List current doctors (attach contact information) as well as a history of prior doctors. For prior doctors, explain why each relationship ended. Include specialists, dentists, eye doctors, gynecologist, podiatrist, psychiatrist, neurologist, cardiologist, and orthopedist. Also include other health care service providers such as physical therapists, occupational therapists, speech therapists, and social workers, etc. Do not forget to discuss doctors or health care service providers never to be used again, and the reasons for their exclusion.

18. List and history of surgeries, diseases, medical conditions, and other important medical information (such as genetic testing, immunizations, and birth control). Include a history of seizures, if applicable, as well as the frequency, type, and description, the signs that a seizure is imminent, what to anticipate and what procedures to follow after a seizure.

19. List of equipment to help with vision, hearing and/or other needs.

20. Family tree (include nicknames). If possible, attach birth, death, and marriage certificates, as well as information on divorces.

21. Medical history of the immediate family.

22. List of individuals outside of the family whom your child may speak about, such as past aides, teachers and friends. Provide contact information to the extent it is relevant and appropriate.

In addition to the foregoing, you should provide information regarding:

1.      Guidance on the best means of communication with your child and any communication tools.

2.      Mobility tools/means.

3.      Daily care, needs, activities, behaviors, habits and routines.

4.      Night time care, needs, behaviors, habits and routines.

5.      Stress and transition times as well as techniques to help your child through those times.

6.      Support systems and/or individuals as well as possible resources, including individuals and organizations.

7.      Special diet requirements, as well as food likes and dislikes.

8.      Friends… and those who are definitely not friends. Explain these relationships and include contact information.

9.      Social activities that your child likes and/or prefers as well as those that are definitely not liked.

10. Educational history, including schools, programs, copies of last few years’ IEPs, MDCs, and psychological evaluation/reports (older ones too, if available). If your child is under the age of twenty-two, include transition plan(s) and other plans for when he or she leaves special education. A copy of the last psychological evaluation/reports and IQ or comparable tests should be attached (if applicable). Copies of older ones should be attached if available.

11. History of employment, day programs, residential programs and/or your thoughts about future programs. If your child is no longer in school and not working, then describe programs or activities in which your child participates during the day. Include past experiences with employment, volunteer work and/or day programming.

12. If your child is employed, or you anticipate that your child will be working in the future, detail what you envision for the future: competitive employment, supported employment, or sheltered employment (workshop). If employed, attach correspondence, reports, and/or plans from supported employment or sheltered employment for at least the last three years.

13. If your child is living in a group home or a facility, attach correspondence, reports, and plans from the agency or organization for at least the last three years.

14. Religion and religious activities that are enjoyed or not enjoyed by the child, and again, your thoughts and wishes for the future in this area.

15. How your child’s income is usually spent.

16. Child’s ability or lack of ability to handle banking.

17. Child’s money skills, such as the ability to make change and understand the value of money.

18. Child’s and trust(s)’ tax returns and information, as well as accountant’s contact information.

19. Funeral arrangements for your child, and your wishes in this regard.

20. Your child’s most successful means/methods of learning and remembering.

21. What makes your child happy, sad, or upset? Discuss warning signs that your child is getting upset. Provide examples of the most successful ways to help your child through that emotion, and to help him or her calm down.

22. Activities your child enjoys.

23. Activities your child does not enjoy.

24. Social settings that are difficult for your child.

25. What might scare your child?

26. How to best to prepare your child for scheduled events.

27. How best to help your child through changes to scheduled and/or anticipated plans.

28. How best to help your child deal with a loss, such as the loss of a family member, loss or departure of staff, loss of a friend, and even the loss of a job.

29. What things motivate your child?

30. How best to acknowledge your child accomplishing a task, or for appropriate behavior.

31. How best to react if your child makes a mistake or fails at task.

32. How best to react and help your child when your child is frustrated.

33. What personal possessions are very important to your child?

34. Your child’s habits and routines, both during the day and in the evening.

35. Activities your child likes (or dislikes) to do, whether with assistance, or on his or her own without assistance.

36. People your child enjoys being with and those your child does not enjoy being with.

37. Favorite vacations, and those never to try again.

38. Exercise activities that your child enjoys.

39. Current and past history of recreational activities and participation, including programs, organizations, and your child’s preferences, likes and dislikes.

40. Your child’s abilities, including household tasks such as food preparation, whether on his or her own or with assistance.

41. Food preferences and dislikes; preferred restaurants; special dietary requirements and food allergies.

42. Events your family celebrates, such as birthdays, holidays (including religious, ethnic and cultural), and anniversaries. Describe the extent and nature of your child’s participation in these events.

43. Your thoughts on your child’s future living arrangements, including geography, housemates, sharing of bedroom, possibly pets.

44. Description and location of your estate planning documents, including, but not limited to wills, living trusts, powers of attorney, and special needs trusts as well as any guardianship documents and/or powers of attorney executed by your child. In doing so, make note whether your third party special needs trust is the beneficiary of the estate planning documents of other family members or individuals who wish to provide for your child. Such documents would include their wills and trusts as well as beneficiary designations under life insurance policies or qualified plans. Maintain a schedule all of your assets including those that don’t pass through your will or probate, such as  insurance policies, qualified plans, IRAs and annuities. Make sure to include the contact information for your special needs planning attorney.

45. Your appointment by the court, if applicable, as your child’s guardian, attaching copies of all court orders, accountings, and reports. Include the contact information for the attorney who has represented you in the guardianship.

Finally, remember that this is your document. No two children are the same. Don’t limit yourself to somebody’s form found on the internet, or even to the form received from your special needs planning attorney. Consider creating a video or audio of your thoughts. Ultimately, written words may be inadequate to express your feelings as parents of a child with special needs.