You are not the only person who can care for your child

My heart is breaking again.  Several times a year, every year, I see stories such as this one – an aging or ill parent caring for a disabled child, has become isolated and hopeless that anyone will ever be able to properly take over the care of their child, and ultimately sees only one way out:  to leave this world together with their child.

The latest story ended in even more tragedy than most of these stories.  A mother facing cancer tried to end her life and her daughter’s life, but the mother did not die.  The mother was found before death and saved, only to face criminal charges in the death of her daughter.  Convicted and facing prison two years later, she was able to try again and this time succeeded in ending her life, as well.

You can read the story in the Chicago Tribune here.

Although it is easy for parents to tell themselves that they would never do such a thing, far too many parents face their child’s adulthood without adequate support and planning and cause untold stress for themselves during their own lifetime, as well as needless stress and chaos for their family after they die.   And yes, a few become so overwhelmed that they make what they have convinced themselves is the best choice for their child.

Please don’t wait to learn about what you can do to prepare for the time when you are no longer able to personally care for you child.  There are choices.  There are safe choices. There are happy choices.  But the longer you wait, the fewer choices you have.

Start here –Four Keys to Special Needs Planning –   or simply call us for an appointment to sit and talk about your situation and how to put together a plan that will make sure your child is safe and secure until the natural end of their life.

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 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 or 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 –  and 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.

Your time is already completely taken up with getting through each day.  But that is precisely 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 the mental energy you have 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.  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.  I didn’t know very much about what I needed to do, but I did know I needed to do something.  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 consider the possibility.

This is what it is 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.

Parker Counsel Legal Services can help you understand how to use special needs trusts and ABLE accounts together in a well designed plan to provide for the future needs of your child with a special need. We serve families in Texas, Massachusetts, New Jersey, and New Hampshire. Contact us for a consultation at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com