Losing a child

The special needs community is truly a community.  Community with shared experiences, shared values, and shared understanding of what it means to have and be responsible and to love a child with special needs.  Each member of the community may have their own unique details, but the community understands and can support each other with a common voice of having been there in one way or another. ID-10084481

Writing a will and preparing a trust for your special needs child is a caring, compassionate, and smart way to help your family transition to life without you, whenever that time comes.  There is enormous value in doing these things.

But what if the transition that comes first is not life without you, but life without your child?

I am a member of a large, online parent group whose members all have children with extensive medical needs.  I have had the privilege of watching many times as a parent shares with us the decline and impending death of their child.  I have felt the warm rush of care and support from the community surround this parent as they help their child prepare for the passing, while the community helps the parent prepare for the passing.  Many of the members have lost their own children, others simply understand, because they know it could as easily be their child.

Grief over a death is much harder than people think before they experience it.  And while it can make a person feel very alone, the experience of grieving is truly universal, and the support of a community can be invaluable.

In central Texas, the wonderful organzation  The Christi Center provides grief support of all kinds.  They also have a page of resources and a list of similar grief support groups in other states.   They also provide help for friends of family of a person who is grieving, with suggestions for what to say and things to do.

Life is not something we do alone.  Grieving is part of life, and should not be done alone, either.

Medical power of attorney vs Directive to Physicians vs HIPAA release

I wish that estate planning were called something else.  Estate planning implies that it is about what happens to your property when you die.  That is, of course, part of what estate planning attorneys do for clients.  But a lot of what estate planning attorneys do is designed to prepare clients for other events, other than death, that happen in their life.

Perhaps personal legal planning is a better term for what I and attorneys like me do for people.

An estate planning attorney will typically help a client prepare a plan for the distribution of their property when they die, but the attorney will also help the client put together plans for medical emergiencies, long term health crises, short term medical issues, and the potential needs that come with aging.  This post discusses three common documents an estate planning attorney will help clients create: the Medical Power of Attorney, the Directive to Physicians, and the HIPAA Release.  The names of the documents and the following discussion is based on Texas law, but all states have similar documents.


The Medical POA is used when a person is not conscious or not competent to make medical decisions for themselves due to medical or physical problems.  The document allows an individual to designate in advance the person (and backups) who medical personnel are authorized to go to for decisions about medical treatment and care.  It is only used with the individual cannot make their own decisions.

Married persons usually designate their spouse, followed a parent or a grown child, but it can be any person in any order.  The document is especially useful for persons who have longtime partners but are not married, and for persons who have a chaotic family where no clear representative would emerge.


In Texas, this is the official name of what is commonly known as a living will.  This document allows a person to state their own wishes about end of life care in the event they have a terminal condition and are unable to state their own wishes as to care and treatment.  It overrides any person designated in a Medical Power of Attorney, but only for end of life decisions.  Basically, the document lets you state whether you wish to continue treatment or to receive comfort care only.

HIPAA Release

Very strong federal privacy laws protect a person’s medical information from being released without the person’s consent.  This document allows a person to give consent to anyone holding protected health information to the person or persons named in the release.  This document only gives access to information, it does not allow the named individuals to make any decisions.  In the event of a serious medical situation, it will allow doctors to talk to the people you name about your condition.  It will also allow your helath insurance company to talk to the named persons about your coverage and claims matters.  In the event you have a serious medical situation, there may be a friend or family member who would be willing to help with insurance issues and general hospital matters, and naming them in this release will allow them to be able to help.


These three documents will make a difficult situation much less stressful to deal with than if they have not been completed.  It’s a life planning matter, a personal legal planning matter, that you will benefit from and your family and loved ones will be grateful that you completed.

Are “A” students entitled to accomodations?

School is just around the corner, and its time to prepare to advocate for your special needs child. Two primary laws protect students in school who have a disability – IDEA, the special education law, and section 504, which is part of the larger federal civil rights law.  Both require, among other things, that all public schools and many private schools provide reasonable accomodations to a student with a disability if that accommodation is needed for the student  to “access” the academic program.

A student who gets all or mostly “A” grades is sometimes considered to be ineligible for accomodations because they are doing fine, or so the thinking goes.

Not true.

High grades may be an indicator that the student does not need any accomodations, but it is not the end of the inquiry.  For example, a student in a wheelchair who gets all “A’s” but can’t take some the classes she wants to take because they are on a second floor of a building with no elevator would clearly be intitled to some sort of accomodation so that she can take the classes she wants to take.  That example is pretty easy to see.

But the same logic applies to other, less immediately obvious, situations.  For example, a student who gets all “A’s” but is unable to participate in school clubs and activities because of a diagnosed disorder that impairs her ability to engage in social interactions may be entitled to reasonable accomodations such as an assigned “mentor” or specialized assistance that enables him to engage with the group.   Another student with a chronic health condition may need a reduced workload or a shortened school day to attend medical treatments or accommodate limited stamina. And yet another student with a mental disorder may need assignments given to her in advance to accomodate periods of time when she is unable to concentrate sufficiently to complete her work.

Student grades are only one of many factors that should be looked at when assessing whether a student needs a reasonable accomodation at school.  So if you have an A student with a disability who is struggling for one reason or another, do not hesitate to go to the school and ask for an evaluation and assessment.

Four ideas to help you finish your estate plan

An odd thing happens in my practice sometimes.  People pay me money and then disappear without getting what they came for.   Here’s how it happens:

A couple comes in to talk about doing their estate plan.  They tell me, sheepishly, that they have been meaning to do this for a long time but are only now getting around to it.  I assure them that is more common than they think, and tell them that the only thing that matters is that they are getting it done now.

We talk about what they want, they write me a check for half the fee, and a week or so later I send them rough drafts of all their documents.

Then I wait.  And send them weekly emails asking if they have questions.

Sometimes, I wait for a few months.  Sometimes I wait longer.  Sometimes I get a response when I say “Please let me know if you intend to complete this plan so that I can keep your file open.”

And then there are a few clients who I never hear from again, despite the fact that they have already made a financial comittment to the project.

These experiences make it clear that it is really hard for a lot of people to write their will.

I offer these tips to help you get to completion on this project:

1. Remember that perfect is not the goal.  The goal is to make things easier on those you leave behind, and almost any plan is easier for your loved ones than having no plan.

2. Also remember that you can always make changes in the years to come.

3. Set a time to sign the documents.  When you first meet with your attorney, make a committment to a specific date for the final signing – then it’s like homework and even if you wind you up pulling an all nighter to get your part of the assignment done, at least it will be done. A sense of urgency can be your friend.

4. Make appointments with yourself – put a time on your calendar to research and choose an attorney, put a time on your calendar to go through the paperwork, put a time on your calendar to review the drafts your attorney will give you, etc.  Treat this with as much seriousness as you would treat a work project.

If you’re ready to get started, give me a call.