A large part of special needs planning involves thinking about the living situation your child will be in when they become an adult. Many families never really think about it and simply continue on with their now adult child living at home in pretty much the same way they have been all along, but without the structure of school. Other families struggle to come to terms with the fact that their child has needs the family can no longer handle on their own. And other families prepare elaborate, detailed plans for what they see as an ideal living situation, if only it existed.
There is no such thing as an objectively good or bad choice for your child’s home. The safety and happiness of your child are prime considerations, but what makes your child safe and happy may not look at all like what makes another person’s child safe or happy.
Your child’s adult living situation will depend on a number of things:
- their physical and other needs
- the family’s resources
- the needs of other family members
- your child’s wishes
- available options
- and an infinite number of other factors
Even between two people with the same diagnosis, the “best” living situation for each of them will vary just as it does among you and your own friends. While you may long for a rural cottage home, your best friend from high school might be living in a highrise condo in the city. Our children with special needs are no different – there is no one right answer for how they should be living once they reach adulthood.
Here are some examples of what clients of ours have done:
- A family of a child with physical disabilities laid out a plan to modify their home and find caregivers so that the child could live with them as long as possible and still have mobility and room for equipment.
- A family of a child with severe behavioral issues found that an outside residential care setting provided the best solution for their child and family.
- A family with an adult child made plans to purchase adjoining homes so that they could maintain close contact while supporting semi-independent living.
- A family with an adult child that was able to articulate her own goals for herself helped her find a group home that had the support she needed but met her goal of having her “own place.”
- A family whose child had intensive medical needs determined that a nursing home setting near their family home provided the best care while allowing lots of family contact.
- A family with a special needs child built an apartment above their garage for the child to live in with some amount of privacy, while joining the family for meals and socializing.
- A family with aging parents focused on finding a variety of support people to provide both physical and supervisory supports to their adult special needs child so that the parents could phase out of direct care giving.
Some choices are obvious and easy, and other children’s needs present very real challenges in figuring out adult housing. Remember that nothing need be permanent – if you try something and it’s not a great fit, try something else. Housing and adult support looks different for everyone. Setting your adult child up in a home that is not with family is not right for everyone, but it is right for a lot of people and should always be at least considered. The reality is that most children with special needs will outlive their parents, and so will be in housing without family at some point in their lives. Finding that housing and preparing them for it while the parents are still alive and able to be involved may be a kindness both to the adult child and also to the rest of the family.
While home may look different for everyone, good planning is always needed to pull off the goal. When you’re ready to start, call or email us for a quick consultation on how we might be able to help. firstname.lastname@example.org or 833-RED-BOOT (833-733-2668)
You may be sick of the word “unprecedented,” (I know we are!) but the truth is this year has been like no other. If you haven’t before, you probably have been confronted with the reality that our lives and all the safeguards we have gathered around us are fragile and impermanent. Knowing how much our special needs kids depend on us will make you either freeze with fear or go into high gear trying to prepare for every contingency. If, like so many of our recent clients, this past year has caused you to think more than usual about making sure your “affairs” are in order, we have some suggestions for things to be thinking about.
- If you have an estate plan, get it out and look it over. Make sure it still fits your family’s needs.
- If it took you a while to find your estate plan, pick a good place to keep it from now on and let your trusted family members know where you keep it. Make a note in your calendar for a year from now to go look at it again, and tell yourself in that calendar entry where it is.
- Touch base with the people you have named as executor, trustee, agents in your powers of attorney, and any backup people you have named. Ask if they have any questions about what their duties are and what they should do when you pass. Your older and adult children especially want to know what you have planned – read one sibling’s perspective here.
- If you haven’t done your estate plan yet, take some time to think about what you want to do. We’ve posted some light hearted articles analyzing how famous movie deaths have been affected by estate planning choices. Seeing how estate planning can have consequences for your family might get your planning juices going. Batman, Cinderella, Ghost, Harry Potter
- Compile or update the non-legal information about your special needs child. If you suddenly come down with a severe fever and have to isolate and can’t communicate, will your child’s substitute caretakers have easy access to information about emergency numbers, medication, and daily care? Create a binder or accessible computer file with the information that will be needed quickly in a pinch.
Although estate planning may seem overwhelming, our attorneys can guide you through the process and provide ideas drawn from real life to help you put a plan in place and help you keep it up to date with your own changing circumstances. We’re here when you need us.
Couple in late twenties or early thirties have recently purchased a New York City loft and done extensive renovations. One partner is a money manager, the other is a potter. Most of the income is likely provided by the money manager, who is murdered and dies on the spot.
Unmarried, substantial assets, surviving partner without resources to purchase or maintain partner’s assets on her own.
In the supremely romantic movie “Ghost,” Sam Wheat and Molly Jensen are a visibly loving couple who have just moved into a New York City loft in a not-yet-gentrified area. We can surmise that they have purchased it, rather than rented, based on the extensive interior renovations they are doing themselves. Because we know that Sam works in a money management or investment firm handling exceptionally large amounts of money, and that Molly is a potter who is currently spending the bulk of her time working on their new loft, we can guess that Sam makes a fair amount of money and is either the sole or primary income for the couple. Since they have purchased and are working on the loft together, we can guess that they intend to be permanent partners, despite not having married.
Marriage gives each partner to the union certain legal rights to property held or acquired during the marriage. This protects partners whose cash earning, or cash resources are unequal, so that they can continue to have a means to provide for their needs until adjustments to being single can be made.
But when partners are unmarried, even if they intend to share their economic resources as well as their lives, the law does not recognize that partnership without other documents that acknowledge and create it. This means things like a will, or joint title to property, or payable on death and beneficiary designations on accounts are essential.
Here’s what would have happened if Sam and Molly did not do any sort of planning: If the loft was titled in Sam’s name alone because it was purchased with Sam’s money or based on his income, and he left no will, then the loft would legally pass to either his parents, any children he had with a previous partner, or his siblings. Molly would lose her home. Even if Sam had put Molly’s name on the deed as a joint owner with right of survivorship, if he failed to leave her any of his cash accounts in a will or with beneficiary designations, then she would have had to sell the loft for lack of money to pay the mortgage, taxes, and insurance.
Similarly, if Sam and Molly were both on the title to the loft and both owners of the cash accounts, unless the form of ownership specifically included a right of survivorship, then Molly would likely only own one half of everything after Sam’s death with his half going, again, to the parents, kids, or siblings.
Imagine Molly’s state when she realized Sam is present and wants to inhabit Oda Mae’s body so he can feel her again – instead of the iconic, bittersweet, love scene we all swoon over, most probably Molly would have been whipping his sorry ass for leaving her homeless and without immediate means to take care of herself. That would have been a very different movie.
Planning matters. When you are ready, give us a call at 833-Red-Boot (833-733-2668), email email@example.com , or make an appointment here to talk about your needs.
Special needs planning when your child has siblings
(This guest post was written by Cassidy Parker Knight, the adult daughter of one of our attorneys. )
If you’re a parent of a child with special needs, you’ve probably spent some time wondering about what your child’s future will look like once you’re not around to take care of them anymore – maybe a lot of time, and maybe more worrying than wondering. Where will they live? What money will support them? Who will take care of them?
You may not realize it, but if you have other kids who aren’t disabled, they’ve thought about it too. Of course, the reason you’re worried is because you won’t be around, but the reason your other kids worry is because they will be around. They may worry that you plan on your disabled child living with them and they don’t want that, or they may worry that any financial burden will fall to them, and wonder what happens if they can’t afford it. If they’re older, they may worry that there is no plan, and that it will be all on them to figure out after you’re gone.
I think I was in middle school the first time the thought occurred to me that someday, my parents would be gone and it would just be me left to care for my brothers. It’s overwhelming, at just 12, to start worrying not only about your parents dying someday, but all the lifelong responsibilities that will come with those deaths. And the older your kids get, the more aware they’ll become of what those responsibilities entail. I’ve spoken to siblings who made decisions about college, their profession, where they live, and whether they start families all based on their future responsibilities for their siblings.
For a parent, it must be overwhelming to think about planning a future for your child that you won’t be a part of. It can be easy to think that you’re shielding your other kids from that worry, but in reality, the opposite is true. Your disabled child’s adult siblings are your biggest allies, and filling them in on any estate planning you’ve done or wishes for the future you have will also be a kindness to them. It can also help you both to spot problems with the plan while you still have a chance to make your voice heard—for instance, if you want your child with special needs to live with your abled child and you learn that your abled child doesn’t want that, it’s probably important to you that you have a say in the alternative.
In all the conversations I’ve had with other siblings though, the most common worry I hear about the future is not about the responsibility or having to take care of their sibling—it’s about the uncertainty. If you have the estate planning under control, fill your child in, especially if they’re not really a child anymore. Let them know what roles they should and shouldn’t expect to play, and give them an opportunity to tell you whether that fits the role they want to play. Most importantly though, there should be a plan. If that part hasn’t been done yet, starting that process would really be the greatest kindness you could do all of your children.
One of the reasons parents fight so hard for their children who have special needs is that they want more for their child than simply being alive. If happiness was only about not being dead, then you’d expect the human race to be a lot happier, on average, than they are. If successfully taking care of our children with severe developmental disabilities meant making sure they were fed, clothed, and had enough medicine to not die, then our jobs as parents would be a lot simpler.
But a good life is more than that. One of the wonderful things about being human is that we get to define what a good life looks like to us, and people have defined that in vastly different ways. Those ways range from the person who wants to change the world, to the person who wants to honor the creator, whether Mother Nature, God, or some other divine entity, in everything they do, to those who strive to impact those around them in small but meaningful ways, and to those who simply enjoy their existence for as long as they have it.
Parents fight for their children to have medical care, therapeutic care, education, vocational support, and life supports so that their children can have the opportunity to reach a life that is more than mere existence. Community connection, loving and being loved, enjoying their life in whatever way that looks like for them, are the goals that parents have for their children.
Parker Counsel Legal Services provides guidance and representation to families in Texas, New Jersey, New Hampshire, and Massachusetts. Our lawyers will help you plan and prepare for guardianships and other supports for your children with special needs, and prepare special needs trusts to provide support for your child until the end of their life. Call or email us for a short phone consult to see how we can help you.
833-RED-BOOT (833-733-2668) or firstname.lastname@example.org
UPDATE: On April 15 the Treasury department finally announced that it would not require SSI recipients to take extra steps to receive the $1200 stimulus payment. If you have NOT already filed a return or submitted the short form reference in the post below, you should not have to do anything at this point to receive the $1200 stimulus payment for any SSI recipient. It appears that although the payments will be coming from the IRS, not the SSA, they will be made in whatever manner SSI benefits are received – direct deposit, DirectExpress benefits card, or paper check. Right now they are expected to go out in early May.
Most adults who receive SSI benefits are entitled to the $1200 stimulus payments passed by the US Congress. But there are some details you need to know.
Adults (anyone age 18 or older) who receive SSI benefits and are NOT claimed as a dependent on anyone else’s tax return are entitled to the $1200 payment.
The payment will NOT be counted as income to the recipient, and so will NOT affect the monthly benefit.
The payment will NOT be counted as an asset for 12 months, so if your SSI recipient has some money saved and this payment would put them over the $2000 asset limit, you will have 12 months to spend the money before it affects the monthly benefit.
SSI recipients will NOT get these payments automatically. Because of a glitch in the way the legislation was written, and despite urging by disability groups and many legislators for the Treasury Department to fix this oversight, anyone who gets SSI and did not file a tax return in either 2018 or 2019 – which is almost all SSI recipients – will need to file a simplified information form with the IRS in order to get their payment.
If you have already filed a 2019 tax return for your adult child, you do not need to take this additional step.
If you have SSI payments direct deposited to a bank account, the stimulus payment can be sent to the same account. You can also direct the payment into any other bank account that is in the name of the SSI recipient.
If you receive paper checks, you can receive the stimulus payment by paper check.
Unfortunately, if SSI payments are made to a benefits debit card, there is currently no information on how the stimulus payment can be made to that card account. You will have to ask for a paper check if there is no other bank account in the SSI recipient’s name. This obviously will present a problem on how to get that check cashed. One option would be to go ahead and open an ABLE account if that is something you have been considering but haven’t gotten around to yet.
Another option would be to do a third party endorsement of the check to yourself (a parent or other responsible adult) and deposit it into your own account. You do this by having the check endorsed as thus: “Pay to the order of (parent or other), signature of payee (person the check is made out to).” Then when you deposit it into your own account you sign as you would normally endorse a check. But BE ADVISED that some banks will not accept third party endorsements, so check with your bank before you try this.
Stay safe. Stay sane.
If your kids are at home and you’re scrambling to find a way to keep some type of learning going, you are also probably wondering what happens to the carefully worked out IEP your child has?
Clearly we are in uncharted waters. As the health crisis deepens and normal life takes a sharp turn, it is impossible to know exactly what life will look like when we are finally able to shake hands again. This means that there are many questions we cannot answer in detail, but we do have some general information to start from.
If you have a child still in school who has been sent home, the general rule is that if services are being offered by the school district to children in the regular program, then services must also be offered to children in special education. For almost all children, the IEP cannot and will not be followed exactly, but where it can be followed, it should be. The main thing to know is that special education programs cannot simply be abandoned during this period unless the entire school program is temporarily suspended.
The second important thing to know is that the legal mandate for compensatory services will, in most cases, likely mean that schools will have to provide extra services for children in special education in order to make up for missed learning and services during the shut down. The schools will, of course, be overwhelmed with the need for additional services when they re-open, so there’s no way to know exactly what this will end up looking like, but the law as it currently stands does require schools to provide additional special education services when needed services have not been provided.
All of our students are missing learning opportunities at this time, but the law says that our students in special education should NOT take the brunt of the loss if there are limited resources.
As outlined in this factsheet, there is very little room for schools to make exceptions to the special education rules.
Stay safe out there.
Parker Counsel Legal Services serves families in Texas, Massachusetts, New Hampshire, and New Jersey. Call us at 833-RED-BOOT (833-733-2668) or email@example.com
What is an ABLE account?
An ABLE account is a type of savings and investment account that can be held and used by a person with a disability who is receiving needs based government benefits. SSI, Medicaid, and some other assistance programs will not count the money being held in an ABLE account as a resource that disqualifies the person from the benefit.
Who can open an ABLE account?
An ABLE account can be opened for a person who has a disability that began before age 26. It does not matter how old the person is when the account is opened, as long as there is proof that the disability began before age 26. The account can be opened by the person, or by a guardian or other responsible person (see individual state accounts for specifics).
Who can put money in an ABLE account?
Anyone can put money in the account. The person with the disability can deposit work earnings and gifts to the account, but parents, grandparents, and anyone else who would like to give money can also deposit money into the account.
Is there a limit to how much money can be put in an ABLE account?
Yes, sort of. There is a yearly maximum and an overall maximum for money to be both tax advantaged and excluded from available resources for purposes of SSI and Medicaid qualification. Currently, up to $15,000 in deposits within one year. This amount may be adjusted for inflation periodically, and there are a few circumstances where the yearly maximum may be different (lawyers are incapable of answering a question without saying “it depends.”) In addition to the yearly deposit limit, once the total amount in the account goes over $100,000, the extra amount may be counted as a resource for determining eligibility for SSI and Medicaid. The account can accumulate more than that, but it may cause problems for the person’s benefits eligibility.
What can ABLE account money be used for?
Money in the account can be used to pay for items, services, and activities related to the person’s disabling condition. Most state’s interpret this provision liberally, but account holders should read their state rules carefully and keep receipts and explanations for all the money spent.
What happens to money still in the ABLE account when the account holder dies?
Many, but not all, states allow the Medicaid program to be reimbursed for payments made on behalf of the individual during their life. If there is money still in the ABLE account after any Medicaid claim, that money goes to the individual’s heirs or as directed in the individual’s will.
Can a person have more than one ABLE account?
No. Only one ABLE account per person is allowable. However, The ABLE account can be transferred to a different state program if one is found that better suits the person’s needs.
Does an ABLE account have to be opened in the state where the person lives?
No, most state ABLE programs allow accounts to be opened no matter where the person lives. Each state program is a little different, so you may prefer an ABLE account in a different state. You can see the terms of each state program and compare them here – ABLE National Resource Center.
What is the difference between an ABLE account and a special needs trust?
There are many differences, and they serve different purposes in a special needs legal plan, but here are some of the primary differences:
- An ABLE account can hold a limited amount of money, but a special needs trust can hold any amount
- An ABLE account can hold only cash. A special needs trust (other than a pooled trust) can hold real property and other assets as well as cash
- An ABLE account can be managed by the person with the disability. A special needs trust is managed by a Trustee.
- Any money in an ABLE account may have to be used for Medicaid recovery. Special needs trusts that contain only money or assets contributed by people other than the person with the disability do not have to pay Medicaid.
Should everyone who qualifies have an ABLE account?
This answer totally depends on the individual circumstances. Although ABLE accounts do provide some benefits, not everyone is going to need those benefits. And while it might not hurt to have an ABLE account even if one is not really needed, it can hurt if it’s being managed by someone who might not exercise the proper care and that could end up jeopardizing SSI and Medicaid benefits. So no, not everyone who is eligible needs an ABLE account.
Where can I find more information on ABLE accounts?
An excellent resource, especially if you want to compare and choose a state program to open an account, is the ABLE National Resource Center. You can also discuss these accounts and their benefit to you, if any, with your special needs planning attorney. An ABLE account is one part of a larger plan and should be part of the discussion you have with your attorney.
Parker Counsel Legal Services consults with special needs families in Austin Texas, Western Mass, the New Hampshire Seacoast, and Northern New Jersey. Special needs trusts, guardianship, and more. Give us a call and tell us about your family situation for some guidance on how best to plan a safe, secure future for your child. 833-RED-BOOT (833-733-2668)
If you’re the average person living your life, and you’re one of the slightly less than 50% of the adult population who decides to actually write a will, for real, this time, then there’s a good chance you will make one of the following mistakes. So to help you do the best job you can do with this important task (how important? Just ask someone who had a parent or spouse die without a will) we’ve compiled the most common mistakes people make when writing their wills.
- Not finishing. You’d be surprised how many people try to DIY their will but never actually finish signing them. You have to sign in a very specific way, which varies depending on which state you live in but always involves some combination of you, witnesses, and a notary public. Usually all these people have to be present at the same time and sign together, which makes it easy to put off and a lot of people never get around to it. A will without the proper signatures is not a will.
- Not updating. A will should be reviewed and updated as your life changes. Sometimes the problem is that what you own has changed significantly and the way you distributed it no longer makes the best sense. More often, people you named as executor or other fiduciaries have died, become unreliable, or moved far away and can no longer serve.
- Thinking that a will is all you need. Not all of your property is disposed of by your will – if you have life insurance, or retirement accounts, and sometimes even your investment or ordinary bank accounts, have beneficiary designations. This means that when you open the account, you are asked who you want to get the account at your death. Anything you own that has a beneficiary designation will not be affected by your will. This means you have to think about everything together and review (and change if needed) the beneficiary designations you have made at the same time you are preparing your will. If you intend to give everything to your friend Bob, but you forgot that you named your friend Fred on your retirement account, then your intent will not be carried out. Also, there are other useful documents you may need to prepare in addition to a will, even though we tend to think about “writing a will” rather than “writing a HIPAA release,” there are a number of documents that typically are prepared when someone sits down to “do their will.” These include a power of attorney, a medical power of attorney, a HIPAA release (that lets the people you name have access to otherwise private medical information), and a few others. These documents will be needed in the event you become incapacitated, either temporarily or permanently. If you are in a serious accident and spend months in a hospital or rehabilitation center, you will need other people to help handle your finances, your insurance claims, and other similar things, which they will not be able to do easily unless you have prepared these additional documents.
- Not letting people know about your will. Once you have a will, and, hopefully, your other documents (see #3), you need to make sure people know they exist and where to find them when needed.
- Thinking you can do it all yourself. I know, this one sounds very self-important, but a lawyer really is useful when you want to write a will. If you want to make sure you do what you intend to do, hiring a lawyer is definitely the way to go.
Parker Counsel Legal Services consults with special needs families in Austin Texas, Dallas Texas, Western Mass, the New Hampshire Seacoast, and Northern New Jersey. Special needs trusts, guardianship, and more. Give us a call and tell us about your family situation for some guidance on how best to plan a safe, secure future for your child. 833-RED-BOOT (833-733-2668)