Daddy’s Dyin’ . . . and we ALL know where the will is!

Lack of planning is funny in the movies

There are way too many movies that start with an impending death and then descend into a madhouse of maneuvering among the heirs – and secret potential heirs. This scenario makes for a treasure box full of comedy and intrigue and we all love to watch other people trip over themselves and muddle through family trauma (for some reason I have yet to figure out). The headline on this post is a reference to the movie “Daddy’s dyin’, who’s got the will?”

Lack of planning is not funny in real life

In real life, though, these are exactly the scenarios lawyers are trying to prevent, although lawyers can make a lot of money off of feuding families. Personally, I would rather help lots of families for less money from each, than to get rich off a years long representation in a will contest for just one dysfunctional family.

Having a good estate plan in place will not eliminate the dysfunction in a family, but it will close off one outlet for expressing that dysfunction. If you are one of those people that enjoy the comic possibilities in a madhouse family, I assure you that you will still have plenty of opportunities to sit back and watch them in action. On the other hand, no one’s inheritance will be pointlessly delayed – or paid out to the lawyers – if everyone has a good will or trust in place.

Add in a family member with special needs who requires an extra and specialized layer of protection, and there is just no reasonable way to justify not having an estate plan in place.

Now, what does all this have to do with this week’s Thanksgiving Holiday?

First, upcoming family dysfunction is top of mind.

Second, and most importantly, the gathering of family members presents a perfect opportunity to have some conversations about your own estate plans, to make sure family members who have been named as executors or trustees understand your plan, and that they know where the documents are. This is the time to talk to family members about what resources your child with special needs will have and how they will be managed.

Of utmost importance, this week is an opportunity to make clear to your loved ones that you want all of them (or specific ones of them if your family is one of THOSE families) to stay involved in the life of your child with special needs even if they haven’t been given a formal role as guardian or trustee. Make sure your family knows that they can and should continue their relationship with your child in whatever form it takes, even after your death.

​If you haven’t created an estate plan yet, this week is a good time to start talking to family members about the roles they would be willing to play in your child’s life after your death. That will give you a head start on the estate plan that I am sure you will be getting started on soon.

With love and thanks,

Pamela Parker

If you need to talk to us, schedule a time here:

A few more favorite movies/shows about estate planning you can watch this holiday weekend:

Knives Out

The Descendants

Downton Abbey


The Aristocats

​I’ve previously written about these estate planning movies:





ABLE Accounts and Qualified Disability Expenses: How to Get it Right

ABLE accounts are a great tool for people with disabilities that is increasingly being used by families as part of their special needs plan for children with developmental disabilities. A lingering and persistent question for these families surrounds ABLE accounts and qualified disability expenses and what a qualified disability expense actually is.

Parent about to take notes on qualifying expenses to be paid from an ABLE account.

ABLE Accounts and Qualified Disability Expenses

To receive the protections and benefits of ABLE, the account can only be used to pay for Qualified Disability Expenses. An expense is “qualified” if:

  1. You incurred the expense at a time when you were considered an Eligible Individual (see “Eligibility” above);
  2. The expense relates to your disability.

The expense does not need to be “medically necessary” nor does it need to be for the sole benefit of the Eligible Individual.

Using the money in an ABLE account to purchse gifts for others is probably not related to the disability, but it’s not always easy to determine whether other types of expenses are allowed.

Social Security Administration Guidance

Each state program is charged with defining this term, and most states have developed very broad definitions that encompass most common uses for money in these accounts. However, we have some giudance from the social security administration. The following list is set out in social security guidelines for their examiners.

Qualified disability expenses (QDEs) are related to the blindness or disability of the designated beneficiary and for the benefit of the designated beneficiary. In general, a QDE includes, but is not limited to, an expense for:

  • •Education;
  • •Housing;
  • •Transportation;
  • •Employment training and support;
  • •Assistive technology and related services;
  • •Personal support services;
  • •Health;
  • •Prevention and wellness;
  • •Financial management and administrative services;
  • •Legal fees;
  • •Expenses for ABLE account oversight and monitoring;
  • •Funeral and burial; and,
  • •Basic living expenses (includes food)

Housing expenses detailed

The agency goes on to say that housing expenses include expenses for:

  • •Mortgage (including property insurance required by the mortgage holder);
  • •Real property taxes;
  • •Rent;
  • •Heating fuel;
  • •Gas;
  • •Electricity;
  • •Water;
  • •Sewer; and
  • •Garbage removal.

Why these things matter

Under federal law, the money in an ABLE account (up to the annual and lifetime maximums) is not considered when determining the eligibility of the account holder for SSI or medicaid benefits. However, even if the amount of money in the account meets the requirements, if the account is not used as intended then social security could determine that it no longer qualifies as a proper ABLE account, and would no longer be excluded from consideration for eligibility purposes. In less lawyerly language, this means if you don’t use the account the right way and spend money on the wrong things, you could lose the protection of the account.

How Do ABLE Accounts Fit Into the Larger Plan?

ABLE accounts are a valuable tool as part of your overall special needs plan for your child. They are useful for adults with disabilities who have the ability to manage and use money on their own, allowing them to save and spend without the restrictions otherwise imposed by SSI requirements.

But even for adults who are not able to handle their own money, these accounts provide a simple place to stash smaller cash windfalls, like the stimulus checks that arrived during the pandemic, or any gift from grandparents or others, as long as it is less than the yearly contribution limit. The accounts can also be used to supplement housing and food expenses without causing a reduction in SSI benefits.

A frequent question in the minds of parents is whether they should have an ABLE account or a special needs trust for their child. ABLE accounts are NOT a subsitute for a special needs trust. They serve different purposes and work in different ways. Some things you can do with a special needs trust cannot be done with an ABLE account, and some things an ABLE account can do a special needs trust cannot do.

Almost all families will need to create a special needs trust, but not all families will need an ABLE account – but many families will benefit from having both a special needs trust and an ABLE account. And depending on the situation, some families will need more than one special needs trust.

Who is eligible for an ABLE account?

ABLE accounts are a great tool for people with disabilities, but not everyone is eligible. A person of any age can open an account, but the disabling conidtion must have started before the age of 26. A parent can open an account for a minor, as long as there is a disability, or the disabled individual themselves can open an account once they turn 18. If the disabled individual is not able to handle their own affairs, a guardian or other person with authority can open the account on their behalf. Even disabled individuals over the age of 26 can open an account, as long as the disabliity began before age 26.

Disability can be established by indicating receipt of SSI or Medicaid benefits. If the individual is not receiving SSI at the time of opening the account, a medical statement of disability can be used to establish eligibility for the account.

Opening an account

ABLE accounts are authorized by federal law. Each state is responsible to create an ABLE program. Most state programs allow people from any state to open an account, so an individual can compare the features of different programs and choose the one that best fits their needs. The ABLE National Resource Center has a comparison tool for all the existing ABLE account programs, and links to each program that will provide information on opening an account. You don’t need an attorney to open an account, but the use of an ABLE account and how it fits into your overall special needs legal plan should be part of a consultation with a special needs law firm attorney.

Once you have an account, develop a method for keeping track of yearly contributions so that you don’t exceed the yearly limit. Make sure you provide information about contributing to the account to relatives who may give substantial gifts to your child, or who may want to make regular contributions for housing or other monthly costs.

Maintenance and closing an account

Individuals may have only one ABLE account. However, an existing account can be transferred to another state program if at some point a different program is a better fit. An existing 529 college savings plan for the disabled individual can also be rolled into an ABLE in some situations, if it’s determined that the individual will not be incurring college or other qualifying educational expenses. Unneeded 529 accounts can also be handled in a few other ways, but it is beyond the scope of this article to get into that.

At the end of the life of the account holder, any money remaining in the account may be claimed by a state Medicaid program that has paid benefits on behalf of the individual. If Medicaid does not make a claim, or if there is still additional money after the claim, that money will go either to the estate of the disabled individual, or according to a beneficiary designation made by the individual.

Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at

Developmental Disabilities, SSI, and How to Get Approved

The cornerstone of any plan created by parents for a child with a developmental disability who will not be able to support themselves as adults is ensuring eligibility for SSI and Medicaid are maintained. Why? Because those two programs provide the safety net that makes sure vulnerable people with disabilities have their basic needs met – food, shelter, and medical care. Once eligibility and access to those programs is protected through the use of tools such as special needs trusts, family estate planning, and ABLE accounts, then a plan to supplement the basics can be created. Developmental disabilities, SSI, is a crucial part of any plan.

What is SSI?

SSI stands for Supplemental Security Income.  It is a federal program run by the Social Security Administration (SSA) that provides monthly cash benefits to people who are disabled, low income, with few assets, who cannot work at all or enough to earn substantial wages toward their own needs. It is considered a “needs based” benefit program.  

What is Medicaid?

Medicaid is a program that provides both health insurance and long term supports and services for people with disabilities. Medicaid may pay for things like nursing homes or group homes, personal care assistance for people living at home, and long term therapies.  In most states, if you apply for and are approved for SSI, you will automatically get Medicaid as well.  In some states, there are two separate applications, but the eligibility requirements are similar.  

When is the right time to apply for SSI?

An adult can apply for SSI in the month after they turn age 18, or anytime after that. In most cases a person with a developmental disability should apply before they turn age 22, as it may be easier to qualify than if they wait until they are older. Family income is not considered in determining eligibility for anyone 18 or older.

Applying for SSI requires showing the following things:

  • The person has very little or no regular income, either from work or another source.
  • The person has less than $2000 in cash or property.  Some property may be exempt from consideration, such as a house or vehicle.  
  • The person has a disability within the meaning of the law – roughly defined as a physical or mental impairment that substantially affects one or more life functions, and that impairment is expected to last more than one year.
  • The person, because of the disability, is not able to hold a job that will earn a sufficient amount of money to provide for their basic needs (food and shelter). This is what SSA calls “substantial gainful activity.”

Successful applicants for SSI have done the following things:

  • Disposed of any assets over $2000 in an appropriate way (spent, placed in an ABLE account or a first party special needs trust)
  • Provided complete and detailed information about medical diagnoses, treatments, medications, and providers.
  • Provided information detailing the functional limitations that prevent the person from working to make a sufficient amount of money to provide for their own basic needs.  

Reasons SSI applications are denied:

  • The person is receiving too much income.  Calculating the amount that is “too much” is complicated, but if a person is not married and makes more than roughly $1700 a month from working, they may not qualify for SSI. If the person is making close to that amount, consulting with an attorney will help clarify if SSI is a possibility.
  • The person is not meet the definition of disabled.  For most people with developmental disabilities, a denial for this reason probably means that the SSA did not have enough of your medical information to make a proper determination.
  • The person is determined to be able to hold a job of some type.  This is the most likely reason a person with a developmental disability would be denied, but it often means the SSA did not have sufficient information in the application to get a good picture of the persons limitations.

Successful applications for SSI focus on the skills and abilities that are needed to work. 

This is far more than an ability to do the actual task involved in the job.  For example, a person may be able to do the actual job task, say unloading a delivery truck.  But to hold a job unloading delivery trucks, the person would have to be able to arrive at work on time, be able to understand and follow instructions, be able to communicate with co-workers or supervisors when needed, be able to understand when there is a problem that needs further guidance, be able to work in the environmental conditions present (heat, cold, noise, etc), and a whole host of other things that go into successfully holding a job.  For many people with developmental disabilities, these are the things that present sufficient difficulty to keep them from being able to hold a job at all or to work enough hours to make sufficient money. 

Further, it is those things that may not be readily apparent to the person at SSA determining eligibility, unless the applicant very clearly describes all the ways in which their disability interferes with the ability to hold a job.

That information can be provided to SSA in a number of ways, such as:

  • The person’s own description of their abilities, if possible
  • Information provided from those who know the person, like a parent, teacher, therapist or medical doctor
  • Information from school assessments
  • Record of work history and detailed description of why each job ended

Demonstration of failure is not required

An applicant for SSI does not need to have tried to work and failed before they can apply.  Some people will not know they are unable to work until they give it a try, but many people with developmental disabilities are very clearly unable to work and need not attempt to do so before their application is accepted. If the medical and educational information available shows the person does not have the necessary skills or abilities to hold a job of any kind, then that will be enough to have SSI approved.

Effect of a parent’s retirement or disability

When the parent of a person receiving SSI retires, or if the parent becomes disabled and receives social security disability benefits (which are different than SSI), then the person with SSI is eligible to receive a child’s benefit based upon their parent’s work record.  If the amount that they would receive is more than their SSI benefit (currently the maximum SSI benefit is $841 a month), then the person will receive the higher amount but will be able to keep their Medicaid benefit.  If the amount of the benefit from the parent is less than the person is currently receiving, they will receive that plus SSI up to the maximum amount of SSI.

What if the person receiving SSI later wants to try and work?

SSI does not require that you be completely unable to work.  If a person can work a few hours a week, or can work with a job coaches assistance, as long as their earning are less than about $1700 a month (the exact calculation depends on many factors) then they will continue to receive SSI.  The SSI amount paid is lowered in each month where there are earnings.  SSA also has programs that will allow a person to continue to receive SSI during a transitional or trial period if they are trying to reach independence through work.

Can a person receiving SSI get married?

Yes, of course, but there may consequences to the SSI.  Whether they can continue to be eligible for SSI, and whether their monthly benefit amount will be affected depends on many factors.  Anyone receiving SSI who is thinking about marriage should talk to an attorney or SSA before making a walk down the aisle.

Once a person is receiving SSI, what happens?

A person with SSI must promptly report any income to SSA.  Income includes wages from work but also any other regular payment to which the person is entitled or for which an expectation has been created.  Occasional cash gifts do not need to be reported, but a promise by dad or mom to give the person $XXX of every month does have to be reported. SSA will also periodically review the person’s case to determine whether they are still disabled. 

What if the person is not able to manage their own money?

SSA will appoint a Representative Payee to accept and manage the monthly SSI payment on behalf of any person who is not capable of managing their own money.  This can be done whether or not the person has a guardian.  The Representative Payee will be required to make yearly reports to SSA on how the money was used.

What else should families do to preserve the adult child’s SSI eligibility?

The primary reason a person with a developmental disability would lose their SSI and Medicaid is if they receive a large amount of money or property from inheritance or life insurance. Therefore it is very important for parents and grandparents to set up special needs trusts and have a will that leaves any gift they intend for the person to that special needs trust for their care. If money is gifted to a property drafted special needs trust, it will not cause the person to lose their SSI, and it will provide money to use to supplement their care.

Is there anything else families should do to preserve the adult child’s SSI eligibility?

Any person that intends to help support or provide gifts of any kind to a person receiving SSI must make sure their gift doesn’t unintentionally cause problems. Consulting with a special needs law firm, with attorneys who understand how to use ABLE accounts, trusts, and other tools to provide for a person without causing SSI problems, is the best way to protect that person.

Parker Counsel Legal Services is a special needs law firm with offices in Texas, Massachusetts, and New Jersey. Set up a consultation to answer your questions by scheduling a brief call, email, or call 833-RED-BOOT (833-733-2668).

Animated person walking on stairs that spell "start" for developmental disabilities, ssi

Dive into ABLE accounts vs special needs trusts

We frequently get asked by families whether an ABLE account or a special needs trust is best for them.  The short answer is a typical lawyer answer: it depends.  The medium answer is that they serve different purposes and its not a matter of choosing one or the other, its about choosing the best vehicle for specific purposes, and in the end, most families should have both an ABLE and a special needs trust.

They both serve as a place where money can be accumulated for a person with a disability without interfering with eligibility for SSI and Medicaid benefits. Past that commonality, there are significant differences.


An ABLE account can be owned and even managed by the person with the disability, if they otherwise have the ability. The disabled individual can make his or her own decisions and use a debit card or checks to pay for items.

A special needs trust must be managed by a trustee, who makes all the decisions about investment and use of the money in the trust.  The person with the disability, or a guardian or caretaker, can propose expenditures from the trust, but the trustee makes the final decision and handles the purchase.


An ABLE account has both yearly and lifetime deposit limits, at least for purposes of excluding assets from consideration for SSI and Medicaid eligibility. Up to $15,000 per year (approximate, this amount is tied to an index so will vary slightly year to year) may be deposited without impacting SSI or Medicaid eligibility.  A maximum of $100,000 total can be held in the ABLE account without impacting SSI or Medicaid eligibility.  The yearly deposit limit is far below what a person might typically receive from a parent upon the parent’s death, when property, retirement accounts and life insurance are all figured in.  An ABLE account can hold only cash, as well, so if a child is left property other than cash it could not be shielded by the ABLE account.  Money can be contributed by any person.

A special needs trust has no limit on the amount that can be contributed to it at any time, nor a maximum value overall.  A special needs trust can also hold any type of property, including a house, car, or other non-cash assets (with the exception of a pooled trust, which is not discussed in this article).  Like the ABLE account, money can be contributed by any person, but if the disabled person will be a contributor then the trust itself must have some special provisions.

Number of accounts

A person may have only one ABLE account.  It is not possible to get around the contribution limits by opening multiple accounts, as only one account is legal permitted.

A person may have any number of special needs trusts naming them as beneficiary.  Each parent and each individual grandparent could set up their own special needs trust for a person if they so chose, giving them the ability to choose the trustee and terms of their own liking.

Read more on ABLE accounts and special needs trusts:

ABLE Account Q&A,

4 Things to know about ABLE Accounts,

How NOT to use special needs trust money,

Does your child need a special needs trust to get Medicaid?,

The basics of special needs trusts

A special needs law firm can help you figure out what you need for your child, and how to put all the planning pieces together.

Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at

A wonderful home looks different for everyone, even those who require a little help

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.

Once you have an idea of what you want your child’s future home to look like, talk to a special needs law firm who can help you figure out how to set it up and finance it.

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 Parker Counsel Legal Services for a quick consultation on how we might be able to help. or 833-RED-BOOT (833-733-2668)

Safeguard Your Loved Ones By Reviewing Old Beneficiary Designations

Stick this chore under the heading “As adult as adulting can get.” You’re doing great at adulting if you have a retirement plan, life insurance, investments accounts, bank accounts, and the like. Checking the beneficiaries periodically is part of the package, though, so if you haven’t done it in a few years, it’s time.

Retirement Accounts

Circumstances change, and even if you think you know who you named as beneficiaries, you’d be surprised how many folks check and find out its someone they forgot they had named, or thought they had already changed. If your retirement plans (401(k)s, 403(b)s, or IRAs, etc) are held or managed through your employer, they can probably help you find your designations. If they can’t find your designations, contact the company (or agency, if it is a state sponsored plan) and ask.

While your retirement plans will go to your probate estate if there are no beneficiary designations, or if they cannot be located, this is a more cumbersome and expensive process than having a beneficiary designation. There can also be unfavorable tax implications if the account passes through a probate estate, so it is worth the time to make sure you have and update beneficiaries. And while you’re at it, make sure you get a copy of the designation page to keep with your will so that your representative will have an easier time taking care of things.

Life Insurance and Financial Institutions

Life insurance polices may also need to have beneficiaries updated periodically. A payout to a named beneficiary is typically much faster than having a policy distributed through your estate.

And finally, call your banks and check for beneficiary designations on all your accounts. It is fairly common for the paperwork provided upon opening an account to include a question about beneficiaries, and many people don’t even remember that they did this when opening their accounts. So take a look and make any updates needed.

A special needs law firm can help you identify areas of your planning that might jeopardize your overall plan for your child.

Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at

Improve Estate Plan: Five Quick Ideas to Alleviate Fear of the Unknown

face with a "wow" expression when told how to improve estate plan

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 to improve estate plan for your family.

  • 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. BatmanCinderellaGhost, 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, the attorneys at Parker Counsel Legal Services, a special needs law firm, 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.


Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at

Special Needs Siblings: You’re Forgetting Someone Important

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?

“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.” 

Cassidy and her big brother Dylan

            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.

Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at

Special needs planning blueprint

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.

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    Myth vs Attorney

    As a special needs parent myself, I regularly tell our clients that getting connected to parent support groups is almost a necessity to get through life with a special needs child. Traditional sources of parenting wisdom and tips, like grandparents, the mommy group at the playground, and even the many many many parenting books at Barnes and Noble simply aren’t going to have the information we need for our differently abled and differently developing children. Special needs parent groups are a lifesaver.

    But there are certain types of information that should still come from professionals. I frequently see bits of info regarding benefits and legal issues passed around in these groups that is just plain wrong. Much of it is ultimately harmless, but a lot of things I see can actually result in the loss of benefits and opportunities if the information is taken as true.

    For example, recently this myth has been making the rounds: that individuals with disablities can only open an ABLE account if they are receicving SSI benefits. This is not true. You do not have to be receiving benefits in order to qualify for an ABLE account. And this is only the latest in a string of myths I see passed around about programs and benefits for kids and adults with special needs.

    [The ABLE National Resource Center has a webinar coming up this Thursday, June 20, to bust that and some other myths about ABLE accounts. ]

    Just as you must go to a doctor for a reliable medical diagnosis, you must go to experts for other types of reliable information. An attorney who deals with special needs issues is one great source, and our office is always willing to answer questions – the easiest way to get a question to us is by email but you can also call and leave a message. We will get back to you. We are here to help as best we can.

    Make sure you have accurate information about what help your child is entitled to and make sure you have accurate information about how to get those benefits.

    Parker Counsel Legal Services provides estate planning, guardianship, special needs trusts, and other services to families who have children with developmental disabilities in Texas, Massachusetts, New Hampshire, and New Jersey. 833-RED-BOOT (833-733-2668) or schedule a short information call at calendly.