Remember Spock’s Mind Meld? If not, you may want to ask someone a bit older than you. As a refresher, it is a telepathic link that Vulcans (from the Star Trek franchise) can create with other organisms. A Mind Meld could allow a Vulcan to know all the intimate, innumerable details of our lives as loving caregivers of our children with disabilities with a simple scalp massage. Alas, Vulcans don’t exist and so the Mind Meld simply remains an interesting way to forward a sci-fi plot.
Without this as an option, how do we convey all the intimate details of providing loving care for our child with a disability to the person or people that will have to step into your shoes when we are gone?
A Letter of Intent, or sometimes called a Memorandum of Intent, holds as much information about your child and their care as you can write. This is the best way to ensure that the assistance your child receives aligns with the standard of care you strive for.
While not a legal document, directions in wills, trusts and other legal documents take precedence, it will serve as the primary source of information about your child, providing a roadmap for the courts, guardians, caregivers and others involved in your child’s life.
This isn’t an easy task, in fact when you start writing you begin to realize ALL you do for your child. But don’t let the magnitude and importance of the document cause you to procrastinate.
To make this important task more manageable, start with visualizing a morning, day and evening when you are solo at the helm. All of the minutia you tend to, including comments of praise and support, selection or suggestions of food choices, the reminder to brush teeth, while second nature to you would be new information to a new caregiver. Be purposeful in capturing this detail and write it down.
Next, imagine your child is going to stay with someone else for just a short weekend. What would you share with that caregiver to set the stage for the best weekend experience for all?
Of course, you would want the caregiver to know what medications need to be taken and when but how about the fact that chocolate milk is your child’s all-time favorite on a Sunday morning. And, for all to have a full night’s sleep a “white noise” machine is necessary. In fact, “8 Hours Vacuum Cleaner Sound” on You Tube works like a charm.
As you build on the weekend letter to now assume a lifetime of care, include EVERYTHING you can think of. Include these vital components.
• Identifying information and important contacts: Include the basics of full name, birthdate, social security number, medical diagnosis. Include the names and contact information for doctors, therapists and service providers. Add immediate and extended family names and contact information and provide color about relationships. Who are the trustees, named guardian, advocates, representative payee?
• Medical history: Where are the medical records and immunization history? What are the current therapies and outlook for your child’s diagnosis? What about their seizure history, functioning level, vision, hearing, speech, mobility, and blood type? Include genetic testing results, childhood diseases, allergies, medications.
• Diet preferences: Special restrictions, tips for weight management, favorite foods and recipes.
• Housing: Describe current living situation and what has worked and what didn’t. What future plans have been made or what is your idea of the best living arrangement in the future?
• Daily living skills: Explain your child’s IEP or IPP. Where are these documents? What occurs on “days off”? What supports are they receiving and who provides them?
• Educational history: What programs have they or are they participating in? What subjects do they excel in and what concepts are more challenging? What is the ultimate educational goal?
• Day program or work: What have they participated in in the past? What are they doing now and what are future work objectives? What work do they enjoy? What assistance is required and who provides this?
• Recreation, Fitness and Social: Structured activities and non-structured. What gives your child joy and self-expression? Do they have a fitness plan? Who helps and where/when? Who are their friend and what activities do they enjoy together?
• Religion: Are they a believer in a particular faith? Are they a member of a church or synagogue? What religious practices would they want to continue to embrace and observe even when you aren’t there?
• Financial: What assets do they own? Where are they? What are their income sources? Do they receive SSI or SSDI benefits? Do they have Medicaid or Medicare health coverage? If they work, who is the Representative Payee to help report and communicate with Social Security? What expenses does your child pay? Where do they need assistance in management?
• How would any of this change if one or both parents died?
This is just a partial list of topics to include in your Letter of Intent. Think of it as a dynamic, ever-changing process. There is no one right way to create your Letter of Intent. It is as individual as every child and family.
Once created, keep it with other important documents relevant to your Special Needs Plan such as your estate planning documents, investment account information and life insurance information. Keep these secure but not a secret to those that may need access. Consider making copies of your Letter of Intent and distribute them to others involved in your child’s life. Then, mark your calendar to review and revise annually if necessary so it will continue to reflect your child’s current life stage and situation.
No one wants to think about leaving any child. But if total independence is questionable the thought is even more terrifying. However, if you address their care needs in writing now, you will sleep better knowing you have built a bridge of transition between you and the loving care you provide and that special someone taking over your vital role. Give the new caregiver the invaluable gift of your knowledge. All involved will be forever grateful.