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the crucial special needs planning document that you desperately need but have never heard of

All parents with children with intellectual and developmental disabilities know that they require our constant love, devotion, energy, compassion and patience.  Sometimes when Emily and I are with our friends who only have typical children I find myself amazed at the amount of independence and self-reliance displayed by their children who are younger than our son with Down Syndrome, Luca.  They are able to sit back and relax while Luca requires a lot more hand holding and motivation to play that same way.  We know his breakthroughs will come though as we have already seen that persistence and patience as parents pay off with things like the swings and slides at the park, the swimming pool, and how the beach went from being a place of sensory overload and meltdowns for Luca to one of his favorite places in the world.


However, on top of everything we pour into them on a day to day basis, their special needs also require special attention and planning.  Parents of children with special needs know that their child will likely require lifetime care, care that can be both complex and expensive.  We also realize that there is a very good chance our children may outlive us. Yet many parents have not planned for this eventuality and, in far too many cases, parents have not even executed Wills!  For the child with special needs, the consequences of their parents failing to plan properly can be nothing short of disastrous.  Who will care for the child?  Where will the child live?  Who will pay for the child’s expenses?  Who will administer necessary medication?  Take the child to the doctor?  Feed the child?  You must plan for all aspects of care for your child, and you should do it as soon as possible. 

“Often, as parents we are the only ones with the specific knowledge of the child’s needs, medications, physicians, likes/dislikes, routines and habits.  Without proper planning, if you were to die suddenly, no one will know how to care for your special child.”

Often, as parents we are the only ones with the specific knowledge of the child’s needs, medications, physicians, likes/dislikes, routines and habits.  Without proper planning, if you were to die suddenly, no one will know how to care for your special child.  You must ensure that a transition will be as seamless as possible, to protect the special child from dislocation and disruption and assure a continuum of care and safety.


When it comes to estate planning, and specifically special needs estate planning, most people just don’t know where to begin.  We are not taught about Wills and Trusts and Power of Attorneys in school, we just know that we are supposed to have estate planning documents, especially once you have kids.  One excellent start is to take the following approach: identify the special needs of your child; develop information about each need and a specific plan to address each need; and plan methods for paying the costs of meeting those needs.In short, prepare a user-friendly road map, sometimes called a "Letter of Intent", containing as much information as possible on caring for the special child.   Give a copy of the roadmap to the person who will care for your special child when you cannot.  This way, whoever takes over as caregiver will have the necessary guidance and information to care for the child from the very first day.


Where to begin?  First, imagine you are no longer around and someone has come to your house in order to care for your special child.  What would you tell that person if you could?   Pretend you are writing a letter to the caregiver.  At a minimum, your letter must address the following areas.


  1. Medical / Physical:  Specify in detail the nature of each of the child’s disabilities.  Provide a complete medical history starting from early childhood.  If possible, list names and contact information for every doctor the child ever consulted.  Identify current physicians and other care providers, medicines (with a schedule for dispensing them), pharmacies where the prescriptions are held.  Provide addresses and telephone numbers.   Specify the child’s eating habits.  What is her clothing size and taste?  What kind of food does she like or dislike?  Can she dress, feed, move, bathe or toilet herself?   If not, what type of help does she need?  Does the child have special transport needs. 

  2. Psychological / Emotional:  Identify any psychological or emotional issues the child may have.  Does he anger easily?  Is he shy?   If the child is receiving therapy, include details on the therapist and the type and frequency of treatments.

  3. Safety:  Is your child safe to leave alone?  Are there any alterations to living arrangements that are currently necessitated by the disability or may become necessary if the disability worsens?  What other steps must be taken by the caregiver to protect the child?

  4. Social:  What does your child like to do?  Read?  Watch TV?  Play video games?  Listen to music?  Paint?  Travel?  Equally importantly, what does the child not like to do.  If the child has friends, identify them, with addresses and telephone numbers.

  5. Spiritual:  Does your child have a faith life?  Identify the spiritual counselor (rabbi, minister, priest) with contact information.  If the child does not have a spiritual counselor consider establishing a relationship among yourselves, your child and a counselor.  This will assure the child will have spiritual comfort upon your passing.

  6. Financial:  Will your child have money to live, to pay medical expenses?  Where will the money come from - inheritance, government benefits?  Do they have a job?  If so, where, and what are the work hours?  Where will your child live?  Is he/she receiving any government benefits? If so, which ones? Provide details on the benefits, along with contact information at the relevant agencies.  If he/she is expecting to inherit money from parents, grandparents or others, the inheritance may cause a loss of any government benefits that are based on financial need, such as Supplemental Security Income (SSI) or Medicaid.  If so, have provisions been made for special needs trusts or other vehicles to receive the funds, instead of your child, in order to avoid losing those benefits?


As you go through this process you will uncover areas that are as yet unaddressed.  Once you have completed your roadmap, review and update it regularly.  Some of the issues you must address are very complex, particularly areas involving financial planning, estate planning and government benefits.  Lean into the expertise of firms like Three Twenty One to make sure everything is adequately covered and planned for.   A simple mistake can have costly consequences.  The more complete your planning, the more information you can provide, the easier it will be for a caregiver to take over.   Don’t leave your child exposed.  And, of course, don’t put it off.

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