The System

bunch of keysHere’s a brief explanation of the Fearless Family Four Keys System to Special Needs Planning:

If your child with a developmental or other type of disability is not going to be able to care for their own personal and financial needs in adulthood, you will need to set up a system that can ensure they are cared for to the end of their life.  That involves preparation in four key areas.

KEY ONE: Build a Community of Caregivers

Your child will need more than one person, more than a guardian, to help them through life.  People have different roles and purposes in your child’s life and all need to be welcomed and “in the loop” on your child on a regular basis.  Be sure to give everyone permission to talk to each other and speak up about your child.

KEY TWO: Financial Supports

Government benefits are the cornerstone for adults who have been disabled since childhood.  SSI cash benefits from social security along with Medicaid will give your child access to a variety of supports designed to allow them to remain living in the community.  Parents and other family members can also provide substantial amounts of money to supplement the government benefits through inheritance, life insurance, and pension benefits, but ONLY if its done the right way.

KEY THREE: Transition Tools

At various points in your child’s life there will be transitions from one caregiver to another.  You must provide the information needed to make that transition a smooth one.  Everything from lists of doctors and medications to contact information for family and friends to the parent’s priorities for the individual’s life should be written down and made easily accessible to anyone who cares for your child.

KEY FOUR: Legal Documents

The best made plans will only work as you intend if you provide the legal documents needed to enforce the plan.  Court sanctioned guardians, special needs trusts with well chosen trustees, designations of agents and other legal planning tools are a must in order to ensure that your plan can work properly.

When love looks like dropping a potato sack

Worry weighs a lot

There is no reason to carry around a 15 pound bag of potatoes everywhere you go.  Unless you are headed home from the grocery store or are on your way to a cookout, you don’t need the bag of potatoes until its time to use them. And if you don’t plan to cook potatoes, why in the world would you decide to carry the bag around at all? potato sack

And yet, we parents of special needs children, we parents of children that we know will never be able to fully support themselves, fully care for themselves, we choose to carry around a bag of potatoes simply because we don’t know how to put it down.

So what is the bag of potatoes we are carrying?  It’s the worry about our child’s future.  It’s the worry about who will care for them, who will watch over them, who will pay for them – who will love them the way we do when we are gone.  That’s our own special bag of potatoes.  And the burden of carrying it saps energy and strength that could be much better spent elsewhere.

It takes effort but its worth it

There are things you can do to prepare your child for life when you are no longer around.  But first you have to know what they are, then you have to have some idea of how to do them, and then you have to prioritize it enough so that taking those actions you need to prepare your plan can bust through the already overloaded days that special needs parents have – hands on care, driving to school, to therapy, calling insurance companies, supervising, cleaning up after, trying to make a buck, and oh yes, washing your own hair every now and then and trying to get a little sleep at least every few days.

Images that show what it feels like to suffer from mental illness. Bringing the inside to the outside.

I know your time is already completely taken up with getting through each day.  Which is why it is so important to hit overdrive for a little while and take care of your planning for the future.  When you do that, you will actually free up some of your mental energy which will no longer periodically be assigned to worrying about the future.  And when you worry less, your body has less stress, and you actually feel better.  All the things that accompany stress and worry, like tense muscles, stomach and intestinal problems, low energy, more illnesses, will be relieved a bit.  I know that thinking about the future is not your only source of worry, but having seen the physical relief play out on my clients the moment they sign all their planning documents, I would bet that it is more of a worry than you have acknowledged to yourself.

Interdisciplinary problems need interdisciplinary approaches

I have to confess here, that as a mom of two special needs children of my own, these are the same planning things that I had to make myself do.  My kids were teenagers before I shifted my law practice into this area, so I actually was exactly like all of you when my kids were young and I decided to get this done.  I didn’t know very much about what I needed to do, but I did know I needed to do something.  And I wasn’t exactly sure how to best find out what that something was.  I did know that estate planning was involved, so I chose a law firm and made an appointment and had a consultation and filled out some paperwork and signed some documents.  But at the end of it I knew barely more than I had known going into it because the lawyers didn’t really talk to me.  I explained my situation and they asked a few questions and that was about it.  They did the legal actions they knew to do and  that’s all that was dealt with.  It had nothing to do with planning for my child, it had only to do with writing a will and a trust.

Think of it this way:  if you or your loved has a cough, you go to the doctor, you get a diagnosis and you get a treatment of some kind.  Simple response to simple problem.  But imagine you or loved one – and some of you have been in this very situation – has several symptoms.  Say, a cough, a limp, and an intestinal pain.  But the doctor you go to only deals with coughs and doesn’t even have an interest in the limp or the pain.  So you go to a doctor that treats limps, but she doesn’t want to know what the cough doctor said, it doesn’t have anything to do with her.  And then you go to a doctor for the intestinal pain who says nothing is showing up on the tests, you must be ok, and you ask if the cough and limp could be related and the doctor says go ask the cough and limp doctor.  You can’t get anyone to look at the entire problem, they are only willing to look at one individual body part for a problem that may or may not be related to the other problems but you can’t even find out because none of the doctors will even consider the possibility.

This is what its like to try and plan for a special needs child when you don’t have the right information because the situation hasn’t been looked at as a whole, interconnected puzzle.  In isolation, you may have a series of good steps, but they may or may not all work together because no one has actually stood back and looked at the whole picture before starting to guide you through making a plan.

We see living people

This is why I built a law firm whose mission is to help special needs families.  I didn’t create an estate planning firm, although we do that.  I didn’t create a trusts firm, although we do that, too.  Our firm does a lot of individual things, but they are all in service to what we really do:  Planning for special needs families.   Or, as I like to say, our firm specializes in putting down potato sacks.make it happen

You may not know how you can possibly prepare for your child’s needs long into the future, but we do.  Let us help. Download the Special Needs Planning Blueprint on this page, attend one of our online workshops or Q&A sessions on the Four Keys to Special Needs Planning, or go ahead and schedule a personal consultation.   Whatever it takes, we will show you how to get there.

Facing Scary Monsters. Oh, and your own life.

scary monstersApparently, people like being scared as long as it is in small doses in a controlled situation.  Daniel Kelly, a professor at Purdue University, talks about the appeal of Halloween as a time when we can give ourselves a good scare without the risk of really being in danger. Whether you’re watching scary movies or walking through a temporary Haunted House, there’s always a barrier between you and the threat – you can turn the video off or you can walk out of the House and leave all the ghouls behind.  The barrier is what makes the scare controlled.

I bring this up because it’s been my experience that people are scared of doing estate planning.  Some people will tell you they haven’t done it because they don’t have the time or money yet, but personally I think it almost always comes down to fear.  Fear of what they will have to face about themselves, their life, and their family when creating an estate plan.

Many people are, of course, scared of mortality.  For some, that thought alone is scary enough.  Some are superstitious and fear that merely the act of talking about death will start them down a slippery slope to a morbid end that wouldn’t have happened if they hadn’t mentioned <in a whisper> death.  Yeah, right.

But what I have seen the most is not fear of death itself.  Rather, its the fear of confronting the state of one’s own life.  The process of planning requires that we review not only the things we own and the money we have, but that we review our family members, and the friends in our life.  For some people, this brings  them face to face with realities they may be trying to rise above.  For some, it’s painful memories.  For others, it’s a lonely life, or a chaotic family, or relationships they wish were different.  When you add in the need to plan care and support for a family member with special needs or a disability, people often don’t feel that the scary part of the process can be controlled enough to avoid the danger of becoming completely overwhelmed and depressed over the state of their life and their ability to care for their vulnerable family member.

The barrier Professor Kelly talks about – the ability to turn off or walk away from the scary experience –  may not feel like it exists with estate planning, and so people avoid going through the process.  But there is a barrier of sorts, a safekeeper.  It comes in the form of your attorney, sort of your super hero guide, if you will.  Your attorney can guide you through finding a way to handle everything you need to plan for even when you have a less than ideal pool of people to work with.  Attorneys are professional problem solvers and they’ve probably worked with clients who have similar situations to yours.  Their job as advisor to you means that when you have no idea how to do what needs to be done, they can guide you.  They can keep you on track and focused on the planning work at hand, keeping you from falling into the scary world of regrets and what ifs.

Halloween is upon us, and the best scary/not scary experience you can have for the sake of your family is to face the monster, face your mortality, and put your plan in place.

If you’d like to get started, give us a call and set up a consultation.

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 or 413-203-9358  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.

Lights!

Today is the anniversary of the invention of the electric light bulb, a monumental moment in the development of modern life.  Personally, I think the invention of the disposable paper nose tissue was the single greatest invention for the improvement of quality of life, but there are no documentaries about it’s origins, so instead I will offer you this 1922 look at a day in the life of Thomas Edison.

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.