This checklist keeps you organized as you work through creating a plan to care for your child with special needs in the future. Broken into sections that track the Four Keys System we use with our clients, this Blueprint will let you dive in wherever you can without missing items you need to come back to.
It’s overwhelming to think about, we know. But we have a system and can walk you through the four key areas of planning that will create a system to care for your child no matter what the future may bring. We will help you, step by step, put together a community of caregivers, maximize financial supports, create transition tools, and nail it all down with the proper legal documents.
Start with a free phone conversation. Find out what you need to know. Find out how we can help. Find out how to put your plan together. Step by step. It’s easier than it seems. Call us (413) 203-9358 or email firstname.lastname@example.org
It’s January. The full moon is January 2 . . . and then on the last day of the month, January 31, we have a second full moon, a Blue Moon. You know some things only happen once in a Blue Moon, so this month we are celebrating the somewhat rare occurrence of the Blue Moon by encouraging folks to engage in another fairly rare event: the making of a will.
If you don’t have a will, you’ve got plenty of company. About 60% of adults in the US don’t have one, according to a survey by Caring.com. Not surprisingly, the percentage of people who do have a will increases with age, but since you have about a 15% chance of dying before the age of 50, having a will earlier rather than later in life is the best choice. And since the younger you are the less likely you are to have a will, that means that people who have young children are very likely to have no will or any other documents to protect their children if the parents die.
Why don’t most people have a will? Of those who don’t have one, the number one answer as to why (47%) was that they just hadn’t gotten around to it. In other words, they had no reason, they simply had not done it.
If you have children, and especially if you have a child with a special need who will never be fully independent, there should be more of a reason to avoid providing for their future care than simply “I haven’t done it yet.” Whatever your reason for not facing this, we can find a way to overcome it. The Law Office of Pamela Parker is committed to helping families prepare for the future of their children with special needs, whatever it takes. Tell us what is holding you back, and we’ll help you move around that block. Under the Blue Moon, anything is possible.
Check it out – and send us a note at email@example.com or give us a call at 512-804-9934 or 413-203-9358 to rock this Blue Moon with your own estate plan.
You love your child more than anything, even though their special needs can sometimes make life more tiring, more complicated, and more frustrating than your neighbors’ lives. It can also make your own life more stressful, because unlike your neighbors, you may need to take care of your child to the end of their life, even though you probably won’t live that long! There is a way to care for your child from beyond the grave . . . do you know how?
The Law Office of Pamela Parker is providing the following online educational seminars free of charge to residents of Western Massachusetts, including Amherst, Northampton, Springfield, and other areas of the local community. These seminars will help parents of children with developmental disabilities learn about and navigate current and future legal needs. As a parent of three children with disabilities, Attorney Parker is committed to helping families of all backgrounds help plan for their children’s future needs. With the opening of her Amherst office under the supervision of Attorney Hallie Hughes, she brings a proven formula to even more families who will now be able to address the most troublesome worry of all: What will happen to my child when I am gone?
All seminars are free and available online – if you can’t join us at the live time, all registrants will be sent a link to watch the replay at your convenience. Register Now
- Basic Support for Individuals with Developmental Disabilities:
Social Security and Medicaid
Seminar: December 19 at 12:30 pm
2. Additional Issues, Open Q&A January 2, 12:30 pm
3. Family Contributions for Future Support of Individuals with Developmental Disabilities: Special Needs Trusts
Seminar:January 16 at 12:30 pm
4. ABLE Accounts, Sources of Funding, Use of Funds in a Special Needs Trust:
Seminar/ Open Q&A January 30 at 12:30pm
5. Day to Day Care and Assistance for Individuals with Developmental Disabilities:
Guardians, Trustees, and Other Personal Care Helpers
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.
Limiting driving privileges can be tough. The Alzheimer’s Association and Baylor Scott and White will show you when and how to handle this delicate matter. Check out the free program, Dec 7, in Austin. RSVP’s are requested by Thursday, Nov. 30 – lunch is provided free. Open the flyer below for details.
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.
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?
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.
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.
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.
Apparently, 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.
“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
Sadly, 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.