IEP goals: how high should they reach?

“The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it.” -Michelangelo

backtoschool letters smallerSadly, this sums up the school experience of too many special education students.  The greater the disability, the lower the aim set by educators in our students’ individual education plans.  There’s a secret incentive for the aim to be low.  The aim is not low because educators don’t care about our students, but because state and federal agencies measure schools by how well students reach their goals.  The more goals reached, the better the school scores – but that does not necessarily translate into a success for the individual student if the goal was too low to begin with.  Schools have an incentive to set the goal they expect a student can reach, rather than the goal the student should reach.

It’s good that educational goals must be individually determined for kids with developmental disabilities, because every child has a very individual set of abilities.  Individual goals, though, make it difficult to tell at a glance if the expectations for these children are being set at the right level, because there is no universally appropriate baseline to measure against.   In practice, schools tend to set goals that they feel confident can be met.  While the conversation at the ARD meeting may revolve around an “ideal” goal, what gets set down in writing is often only a small step forward, so there will be a “success” in the student’s file.

It is, of course, hard to know how fast or far a child with a developmental delay will progress.  This means there is an element of guesswork in choosing goals, especially at younger ages when the severity of the disability may not yet be clear.  The difficulty in determining in advance how far the child might go is can be remedied by regular review of the progress.  Parent’s must be watching and asking questions to make sure their children are being challenged and pushed.  When a child reaches a goal, modify the IEP to set a NEW goal right then, rather than waiting until the next yearly IEP meeting.

The US Supreme Court decision in Endrew F. V. Douglas County School District just this past spring is a significant win for special education students – it says that schools must set appropriately challenging expectations for students, in other words, they must, to paraphrase the Court, push them to be all that they can be.   Parents, your job is to push your child’s school and teachers to meet that goal.

 

The Basics of Special Needs Trusts

What is a Special Needs Trust?   A special needs trust (SNT) is a tool that lets families provide money to take care of their adult kids without preventing them from receiving medicaid and services from related government programs.

Why do you need an SNT?  Medicaid benefits are available to people who 1) have a disability,  2) have very low income, and 3) have very few assets.   To qualify for medicaid, an individual cannot make more than approximately $1300 a month (specific amounts can be found on the social security website) and cannot have assets totaling more than $2000 (there are some items that are exempt from inclusion in the asset determination, like a home and a vehicle used for transportation).   If a parent is able to provide some money to make a good life for their child either through gift, inheritance or life insurance, the SNT is the way to do it.  Without the SNT, whatever money the parent leaves the child will have to be spent on basic care before government benefits can be used.

How does the SNT work?  Money or property the parent wants to make available to the child is put in the trust.  Most families use the trust to hold inheritance money, or they obtain life insurance that will be paid to the trust.  A trustee is appointed to spend the money on the child in accordance with the wishes of the parents or at the trustees discretion.  In order for the SNT to work for preserving medicaid eligibility, the money is to be used only for things that are NOT covered by government benefits, and cannot be paid directly to the child .

What happens to the money in the SNT if the child dies?  There are actually two types of SNT’s.  The first is created by parents or grandparents for the benefit of the child and funded with their own money and money from any person other than the child.  Money left in the trust upon the death of the child is distributed to beneficiaries who were named in the trust itself at the time it was created. Commonly, remaining money is left either to siblings or their children, or to a charity.

The other type of SNT is one that is created with money that actually belongs to the person with the disability.  These trusts are common when the disability is the result of an accident and there is a lawsuit or damages paid to the individual.  These may also be created if a parent dies and leaves money outright to the child without creating an SNT first. For these trusts, the money is used during the lifetime of the individual in the same way as for a trust created with other people’s money, and the individual may also receive government benefits.  But upon death, any money in the trust must first be used to repay the state for benefits received by the individual.

If you need to set up a special needs trust for your own child or grandchild, give us a call at 512-804-9934 and we’ll be happy to help you out.

Guardianship is a choice, but not the way you may think

There are no true “alternatives” to guardianship for a special needs child.  A parent may choose not to seek a guardianship, but for a person who qualifies for a legally appointed guardian, there is no other legal alternative besides simply not having a guardian.

The term “alternatives to guardianship” is used frequently in  estate planning as a means to prepare for the possibility of incapacity later in life, through dementia, alzheimers, or other disease or disability.  By putting in place powers of attorney and other tools, most people can avoid the need to have a guardian appointed for them if they become unable to manage and take care of their own affairs.  This planning process provides an “alternative” to guardianship later in life.

But for children with developmental disabilities, there is no opportunity to prepare in advance.  Those that do not have the ability to manage and take care of their own affairs have never had that ability.  The only question, when they reach age 18, is whether or not they need guardianship.

When a child turns 18, Texas recognizes them as an adult, with all the rights and responsibilities of self-determination that entails.  Mom can no longer insist on coming into the doctor’s office with them, dad can no longer call the school to find out if they are turning in all assignments, and no one other than the child – now adult – can sign or void a contract in their name.

In other words, parents serve merely an advisory role after age 18.  And they serve completely at the discretion of their child.

The problem is, if the child who has turned 18 does not have the ability to understand and make decisions on their own, even with advice, then all the advice in the world may not keep them safe.  If your child has a developmental disability, this can cause serious problems.  If your child’s disability means that they are not able take care of themselves – cannot substantially provide for their own physical, financial and medical care – because they do not have the physical or cognitive ability to do so, then they are at significant risk being out in the world making their own decisions.

If your child is likely to reject medical treatment because they don’t understand the benefits, or if your child is likely to turn over all their money to a scam artist who is willing to take advantage of them because they don’t understand what is happening, or if your child is so impulsive that they may act without even considering the consequences or any previous decision they may have made or advice they have received, your child is at risk without a guardian in place.

People over the age of 18 who have a disability that prevents them from having the ability to understand and manage their own financial, medical, and daily living affairs should have a court appointed guardian who can make sure they are cared for. The guardianship should only cover the areas in which they are unable to function on their own, so a guardianship may be “full” or “partial,” depending on the individual.

There are some situations in which a parent may choose not to seek guardianship over a child who otherwise qualifies.  Those situations work only as long as the child is cooperative or unable to express an opinion, or as long as others accept the situation.  But if a medical office, or a service agency, is uncomfortable letting a parent speak for their incapacitated child without legal authority, then a guardianship is the only way to overcome that problem.

A child turning adult who does have capacity to make their own decisions and care for themselves in one or more areas can enlist others to help them.  This may be an informal arrangement where they simply ask mom or dad for help, or a formal designation of authority by signing a power of attorney, medical power of attorney, and other information releases.  However, the person signing these documents retains their right to conduct their own business, and can revoke or change the documents at any time.   A Supported Decision Making Agreement is another way to formally agree to help and be helped.  It emphasizes to a special needs adult the importance of using the support system he or she has, but it does not provide anything in addition to other formal documents and is not a substitute for guardianship.

For help figuring out what is best for your child, or to get started preparing guardianship or other documents, give us a call at 512-804-9934.

Fearless Family Fund Grants are here!

We are excited to announce a new tool available to help families complete the legal planning that is so critical to taking care of our special needs children.

The Law Office of Pamela Parker now has grants available to offset the cost of obtaining guardianship, and of doing the estate planning and special needs trust creation needed to ensure the continued eligibility of adults with disabilities for SSI, medicaid, and other needs based government benefits.  Grants are also available for one time consultations on special needs issues.

Applying is as simple as filling out an application and certifying that without the grant you would be unable to obtain needed services without significant financial hardship.

Grants are awarded based upon available funds and time.  Grants may be denied or withdrawn if a conflict of interest appears.  Download the application:  Fearless Family Fund Grant Application pdf

Holidays – good or bad?

All parents of special needs children, no matter how old they are, know that the holidays present extra challenges.  Even children and adults who love the holidays can be overwhelmed by the festivities.  Add in families that don’t fully understand the limitations your special needs family may have in participating in family traditions, and it’s easy to let the holiday stress be your focus instead of the holiday fun.  My wish to you this season is to recognize that more people are behind you than you know, and to remember that every family is unique and all traditions, even non-traditions, are valid.

And in that spirit, I share with you my 24yo son’s photo with Santa, taken yesterday at the mall.  Dylan loves Santa, but sitting with him in the middle of a busy mall in front of flashing lights was a little more than he could handle.  Fortunately, Santa looks more amused than annoyed!  img_20161221_160422

Share your own favorite holiday photos below.

Life is not like a movie

While happily scrolling my facebook feed today, checking out what my friends’ kids wore to the first day of school, and who is outraged about what today, I was suddenly stopped in my tracks by this headline:  “Last hospitalized Pulse shooting survivor discharged after nearly three months.

Pulse?  That was the horrifying mass shooting in Orlando that happened, when, a long time ago, right?  Long enough ago that I’ve had time to be horrified, outraged, sickened, sad, and then . . . going on with my life.  So the news that one of the victims is only now getting out of the hospital, that one of the victims has been under hospital care for nearly the whole of summer, stopped me in my tracks.

Because it’s easy to forget that tragic, massive events don’t end once the story has been thoroughly reported.  They don’t unfold like in the movies, where victims or car accidents, or fatal diseases, or even mass shootings, either die or survive.  In the movies, victims who die are buried and eulogized, victims who survive get up and leave.

In real life, injuries bring your life into a different dimension.  Three months in the hospital can decimate whatever order you had in your life, and if, as is likely, the recovery will continue after release for months or years longer, your life will and must be different.

Which is why planning for the possibility of disruption in your life is so very important.  Legal, financial, and personal contingency plans make the difference between hardship and disaster.  They make the difference between stress about the injury, and stress about every single thing in your life. They make the difference between having the people you know love and care about you around helping, and not having them there.

Writing a will is important, but it’s only one small part of what you will do with an estate planning attorney.  You will also get help putting a plan in place that gets as close as possible in the event of a traumatic injury,  to keeping you focused on your injury and recovery, not on everything else.

When you plan with Pam, things go more smoothly.