PLANNING FOR THE DISABLED

Planning for the disabled.  Yes, we are told to plan for our disabled child or adult child.  But, can we?  Should we?  Which type of disabilities apply?  And, when should we do it?

In my opinion, as I have reached this point raising disabled children who reached the age of majority, it is not worth the time, effort, or money to plan unless:
1)  You are exceptionally wealthy and have money to burn, or
2)  Your disabled child/adult is so disabled as to be labeled incompetent by the courts.

All in all, you would have to have enough funds to make it worth investing in a Special Needs Trust or the Administrative fees will eat the money up over time.  Community Plans also require a lot of money up front.

The problem that we are not told is how higher functioning kids that grow up with delayed development, suddenly change.  I have consulted other parents of higher functioning children who grow no different than "normal" children, just at a delayed rate.  They undergo the same personality change, just much later than their "normal" counter-parts.  This change considered 'independence' can make the person with disabilities go their separate way and not need the support anymore.  This change can come on suddenly and abruptly, taking us by surprise.

I see it as the same thing that happens with normal kids going through transition, just occurring later on with the developmentally delayed, higher functioning adult. It can shock us and make us wonder how to deal with it.  It can be a very trying experience that causes major changes in the way we think as parents.  Going through desperate means for advice becomes futile at this chaotic time.  Life can make an about face.  A portion of this disability goes through this and it is hard to determine for sure who will experience this, when, and how quickly it can happen.

In essence, they spread their wings and fly.  They show they are capable of separating without looking back. They move on with their own lives.  Whatever you taught them that is retained, carries on.  Whatever they experience after this, weather good or bad, is their own problem to contend with.  Unfortunately, that is the way the law works.  After age 18, no matter how mentally delayed they are, they become their own guardians.  Even taking Legal Guardianship has limitations on how much we can intervene, from what Disability Attorneys have told me.

We can't look into a crystal ball to know what will happen to any of us.  So, how can we realistically plan at all for the disabled?  Unless you have a severely disabled child, who needs the most help, that is the one you can be sure of what their future needs would be.

It does not pay to create a Will early on that will need constant updating and costly changes through a Lawyer.  Expect that higher functioning kids may leave the nest and not return.  They may start a new life elsewhere, at their own risk and get assistance by other means.

The bonus here is that you may have other kids or relatives that may benefit from your future planning if they show more stability and make better use of your possessions or assets.

No one ever addresses this possibility unless you talk to people who experience this.  Also, when the disabled child grows into an adult and has outside influences, this can completely transform their way of thinking.  The Internet, FaceBook, Day Programs, Work Programs, etc. all expose these high functioning kids to different lifestyles.  They may be drawn to an alternate life style and choose to try it out.

Day Programs may give 'Empowerment Classes' that go to the kid's head and they may misinterpret what the true meaning of what it really is all about.  Giving too many choices and options to these kids can make their heads spiral, unfortunately. Many of the clients in Day Programs are in Group Homes or Independent Living environments that expose the disabled kids to alternate lifestyle living.  A small population go off on their own or with what they determine to be a friend, and latch on to that life style for a while until it falters.

We do not know how higher functioning children will grow or change.  So, we can not realistically plan for their future.  It can waste years of your life dwelling over this as a parent ages.  Every situation is different, but I have found many similar occurrences happening today by talking with other parents experiencing these life changing events.  I believe that parents are so hurt by what has happened that it is hard for them to discuss it, thinking they are the only ones experiencing it, or feeling like, 'where did I go wrong'.

So, life has to happen.  We can't stop destiny.  Planning may be unrealistic in a good portion of this disabled population as the Autism rate increases and there are higher incidences of  having a higher functioning child on the Autism Spectrum.