IEP and Other Information Resources for Special Needs Parents

IEP information is vital for parents to successfully put an appropriate education plan in place for their school age children. Education, though, is only one of many important services that children with special needs will require throughout their life. Finding those services, and many times simply finding out what services are needed, is an ongoing project for parents of these children. The hunt for services and the hunt for living and support options is a seemingly never ending process.

A library shelf with hundreds of books that might contain info on IEPs, special needs trusts, and more.

Sources of Disability Information

Doctors and medical facilities are usually the first source of information and referral. Whatever diagnosis your child receives, medical providers are the first place that parents will begin to learn about their child’s needs.

Once your child begins school – which happens at age 3 in the early childhood program for many children with developmental disabilities – this will be the primary source of information for the next 15 or so years. Not only will the trained special education staff be a source of information, the administrative and program staff in the special education department will provide information on community, vocational, and other areas through the required transition planning component of each child’s IEP. Some schools do a better job of this than others, but schools are still the most readily available source of information for parents – until the child is no longer in school.

Parents should also be looking to disability groups (the Autism Society, Downs Syndrome Society, United Cerebral Palsy, etc) and parent support groups for additional sources of information. Parents can share their experiences, difficulties, and problem solutions with other parents, and often a parent group is the best way to find community resources that are not associated with the school system. Links to a few parent groups are here – Seek out others and learn from them

Maintaining Support and Information Resources After Graduation

Once a child has graduated from school, the toughest part of preparing for life begins – housing, income, medical support, etc are paramount at this time, but without the structure of school and ready access to professionals, parents and their now-adult children can get lost and feel isolated. Maintaining connections with parent groups and disability specific groups is critical at this point. Parents also should lean on medical providers, attorneys, and state program case managers for advice, information and suggestions.

If they haven’t already done so, parents of adults with disabilities need to be seeking out legal and financial professionals for information. An attorney experienced with disability planning will help prepare plans for the care and support of a disabled individual after the parents’ are gone. A financial professional will help maximize whatever assets the parents have available.

Information rich websites

The ARC of New Jersey, which is one of Parker Counsel special needs law firm’s locations, provides regular, ongoing webinars to educate parents on a wide variety of topics, ranging from school services, to social security benefits, to housing, work, guardianship, special needs trusts, social and sexuality training, and many other aspects of raising and planning for a child with special needs. All of their webinars are archived and available for viewing at any time. Some of the material is specific to New Jersey, but most of it is applicable in any state. This is a great resource for parents and very easy to take advantage of. ARC of New Jersey Parent Webinars

Parents who are still in the thick of grade school and actually still need to learn about IEP’s find a wealth of information and resources at WrightsLaw. This is not a law firm, it is a repository of huge amount of information and guidance on special education law and advocacy. Created by parents who were navigating the special education system itself, this site has come to be the first stop for parents needing to learn about their child’s rights and how to work with – in spite of – their school.

Parents don’t always pass on complete or even accurate information, but there is no doubt that having other parents to lean on for emotional support, and to be able to offer that support to others who have situations similar to your own, is key to keeping perspective and to maintaining the energy to keep going. In person groups, facebook groups, listservs, zoome groups – all offer a way to make connections and find information that might not have come to light otherwise. The Parent Center Hub has search tools to help locate groups for every preference.

Need More Information?

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 legal@parkercounsel.com.

Spirituality and Religious Practice for People with Special Needs

Participation in religious practices can be complicated for people with special needs and their families, but that doesn’t mean that their need for spirituality is any less.  A religious practice for people with special needs is important for many. Since today marks the beginning of Passover, the Easter celebration, and we are still in the midst of Ramadan, this is a fitting time to reflect on your family’s religious needs and the religious needs of your child with special needs.

Many mosques, synagogues and churches have strong and thriving special needs ministries and organizations. While not all congregations are as welcoming for people with different abilities, progress has been made and each faith has resources for congregations interested in doing  a better job of reaching people with disabilities and their families.

Below are links to just a few articles and sites that may be of interest.  If you are searching for a spiritual home for you or your family a websearch for “special needs (your town) (your religion)” will get you started. 

If you have other websites or articles to suggest as resources, drop them in the comments.

Spirituality information

***** Spirituality and Disability: Implications for Special Education “address issues related to disability and spirituality, consider the impact of spirituality on children with disabilities, and suggest some practical strategies teachers can use to help foster the spiritual development of students with disabilities” https://www.researchgate.net/publication/45718875_Spirituality_and_Disabilities_Implications_for_Special_Education

******The Friendship Circle “The core of the Rebbe’s teachings is that none of us is complete unless all of us are included. It is this concept that motivates the Friendship Circle.https://www.friendshipcircle.com/

*******Muslims whose disabilities complicate fasting, praying find alternative ways to practice Ramadan rituals: https://www.chicagotribune.com/news/breaking/ct-met-ramadan-disabled-muslims-alternative-practices-20190501-story.html

*******Spirituality among People with Disabilities: A Nationally Representative Study of Spiritual and Religious Profiles https://academic.oup.com/hsw/article/44/2/75/5248513

******Addressing the Spirituality Needs of Children with Special Needs https://coping.us/parentwithchildrenwithspecialneeds/spiritualityofchildrenwithspecialneeds.html

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 legal@parkercounsel.com.

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Black-ish: The Disquieting Job of Designating a Guardian for Your Children

A few years ago the ABC sitcom Black-ish did something you hardly ever see – they aired an episode that centered on estate planning! Specifically, the decision about who to name as potential guardian for your minor children. (If you want to watch the episode, it’s on Disney+ and some other streaming channels, season 2 episode 19).

Naming a potential guardian for your minor children is one of many tasks that are part of preparing an estate plan, along with writing a will and creating a durable power of attorney. It is also often one of the more difficult and emotional tasks that couples face.

The show did a pretty good job of following the thought process of a typical couple as they work toward a decision about guardians for their children – starting with the reason they went down that road in the first place. 

Mortality Hits

It happened during family movie night.  The Johnson’s and their four children were discussing what movie to watch, with Lion King being one of the options. The youngest was inadvertently told that Simba’s father dies, but is reassured that Simba gets to go live with a warthog or a meerkat or something, and so everything is just fine.  The little boy then asks who his warthog would be if the parents die.

Mom and Dad then leave the room to freak out in the kitchen about the possibility of their own mortality showing up, and decide that they need to figure out who will raise their children if something happens.  Mom wants to embody the spirit of Hakuna Matata from the movie, by which she means don’t worry about it, let the fates decide.  Dad convinces her that’s not the best approach – although many couples do indeed handle the question that way.

Family or Friends?

They start by both assuming it would be someone from their own side of the family, and progress to cancelling out each other’s mother’s, going through each of their siblings and ruling them out for both good and bad reasons – and a couple siblings who rule themselves out. 

They then go down their list of friends, discussing lifestyles and financial means of each.  It was interesting, and not unusual, that they considered financial means more seriously when discussing friends than family.  People tend to assume that family can be leaned on no matter the circumstances, but placing too high of a burden on a friend is uncomfortable. Ultimately, none of their friends seems quite right.

They then go back to discussing their own mothers.  Each think their own mother would be best, discussing physical location, familiarity with the kids, parenting style, and general quirks.  They decide that they should talk to the moms directly about this, and so they set up a discussion about the matter with them.  That attempt ends after both the moms’ seem to showcase all the reasons they should not be picked!

Denial and Acceptance

At a loss for a good choice, the parents decide the thing to do is to stay very healthy and not die while the kids are young.  They begin drinking healthy smoothies and the need to take separate airplanes when they travel. They then get very emotional thinking about the possibility of dying before their children are grown.  Parents of children with special needs often start the process with the emptional reaction.  It is this step where the majority of Parker Counsel’s clients diverge in their discussions.  While most families need to think about caretakers for their children only until the child turns 18, parents of children with special needs typically need to think about caretakers for their children until the end of their child’s life, usually long after the death of the parent.

After their flirtation with denial and grief, they begin to settle on choosing the grandmother that already lives close by and is involved with the children on a near daily basis as the best choice.  It is at this point that their oldest daughter comes to them and they realize something that is especially critical for families of children with special needs. 

It’s not all or nothing

The daughter points out that she is already 17, and she talks about all the ways in which she is already caring for her younger siblings.  She makes a case for naming her as guardian. While she clearly doesn’t fully understand the intensity of being full guardian of the children, the parents realize that the children already have a large and useful community of caregivers.  Even though many of them would be good only at a piece of the caretaking, by keeping all of them as part of the support system, the children would have a wonderful, safe, and loving group of caretakers to support them into adulthood.  By choosing one person to take the legal responsibility, but incorporating the entire group into an informal support system, the children will be well cared for.

Ultimately, this is how most guardianship decisions turn out. In some families, the choice of guardian is obvious and clear cut.  But in families where it is not, the importance of recognizing the value of an informal support system to aid the legal guardian makes the difference in parents’ ability to make this very emotional decision.

In the years 2015 – 2019 its estimated that approximately 3% of children under the age of 18 lost a parent to death. (The JAG Institute, founded by former NFL player Brian Griese and Dr. Brooke Griese)

For a brief idea of things that can go wrong when naming guardians, check out our discussion of Harry Potter’s childhood.

Parker Counsel Legal Services helps clients in Texas, Massachusetts, New Jersey, and New Hampshire prepare estate plans for their individual circumstances. Find out how we can help you – schedule a short phone call, email us at legal@parkercounsel.com or call 833-733-2668

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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 legal@parkercounsel.com, or call 833-RED-BOOT (833-733-2668).

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

Appointing Positions of Trust in Your Estate Plan

Among the biggest decisions you will make while estate planning is who to place in various positions of trust to handle your affairs. These people are called “fiduciaries” because they have legal obligations to act in your interest.  This is one of the tasks involved in how to write a will. Below is a list of positions you may need to fill, and what each of them does.

Executor:

The executor is responsible for winding up your worldly affairs and carrying out the instructions in your will.  This person pays your final bills, finds and contacts your creditors, closes your accounts, takes care of your possessions and business until they can be sold or handed over to your heirs, and makes decisions about how and when to distribute your estate.  The executor can hire people to help, such as an attorney, a tax accountant, a financial consultant, etc., but all the decisions are made by the executor.

You should name two or more executors who can serve as substitutes if the first person you name cannot serve.  You can name co-executors, but that can be tricky as the two people will have to be able to cooperate with each other.

If you don’t name an executor, or if no one you named can serve, the court will appoint one. However, a court appointed executor must post bond.

Guardians:

If you have children under 18, you will want to name guardians for them.  There are several different scenarios.

  • If there is another parent alive, they will be put into the physical care of the parent, even if you name a different person.  If there are unusual circumstances, such as a parent who is incarcerated, has a history of abuse, or is mentally incapacitated, you should talk to your attorney about options for your children.
  • If there is another parent, but you are divorced or have never married the parent, that parent will get physical custody of your children, but you can create a trust for any money you may leave your children.  You can then name a trustee who will have discretion to distribute the money for the care of your child, and to distribute the money to the child as you instruct after the child reaches 18 or an older age.  You will want to name a trustee who is organized, trustworthy, and, preferably, knows you or your child.  However, if there is a large amount of money, you can name a bank or corporate trustee and appoint a family member or friend to act as consultant to the trustee in deciding how to use the money for your child.
  • If there is no other parent, you will name a guardian to take care of your child.  This person will be responsible for caring for and bringing up your child, and will have all the abilities that you as the parent have.  You can name an individual or a couple. If you name a couple, you must specify whether the guardianship changes if the couple is no longer married.  For example, you want your sister to raise your child, and so you name “Mr. and Mrs. Smith” as your guardians.  But suppose sister dies?  Did you really want her husband to raise your child even if your sister was no longer around?  Be clear about your wishes.
  • If there is no other parent, you will also have to name someone to take care of your child’s money.  This can be the same person you named as guardian to raise the child, but often it is not.  You may have one sibling who would be a wonderful parent, but is not very good at handling money.  You can name another sibling to act as trustee for your child. 
  • You do not need to name a family member as guardian or trustee.
  • If you fail to name a guardian for your children, the court will appoint one.  Guardians in this case are usually close family members.

Power of Attorney:

If you create a power of attorney for yourself, you will need to name someone whom you trust to take care of your personal and financial affairs.  This power can be used at any time you cannot take care of your own affairs, whether or not you are actually disabled.  However, this power ends at your death. Only the executor of your will can handle your estate.

Medical Power of Attorney:

You may name a person who can make medical decisions for you if a doctor certifies that you are not able to make your own decisions.  You can also name alternates who can serve if others that you name are not able to do so.

Trustee:

This person is responsible for carrying out the instructions in your trust.  The trustee makes decisions about distributing the money in the trust, in accordance with the guidelines you set up.  A trustee should be responsible and careful with record keeping.  The trustee, can, however, hire professional assistance as needed, such as on administration of the trust. 

 HIPPA form:

The HIPPA release allows you to name persons who may have access to your otherwise private health information.  In addition to giving the person access to doctors and hospital staff, this form is often helpful when a family member or friend wants to help in dealing with health insurance claims and other administrative matters during a health crisis or temporary disability.

 

Digital Assets:

Spend some time considering the various online accounts you have, as well as any websites, blogs, or sales pages, and decide which of these you need to provide instructions and access to.  Depending on your personal choices, these items may be dealt with in your will or in some other way, so initially you merely need to make a list of what you have, which accounts you want to leave access to, which you want to disappear, and what person(s) should handle each of these accounts.

Parker Counsel Legal Services helps clients in Texas, Massachusetts, New Jersey, and New Hampshire prepare estate plans for their individual circumstances. Find out how we can help you – schedule a short phone call, email us at legal@parkercounsel.com or call 833-733-2668

Dive into ABLE accounts and 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.

Ownership

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.

Holdings

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.

If you have questions about preparing for your own special needs child’s future, Parker Counsel Legal Services a call or shoot us an email. legal@parkercounsel.com or 833-733-2668

SSI FAQ

SSI: Supplemental Security Income for Adults

SSI is a federal program administered by the Social Security Administration (SSA) to provide monthly cash payments to people with disabilities who have little to no income and fewer than $2000 in assets. It stands for "supplemental security income" and is not the same as SSDI (social security disability income), which is a program for adults who become disabled after having worked and paid into the social security system. Children under age 18 can receive SSI, but family income is considered in the eligibility determination. Once a child turns 18, only income and assets belonging to the individual are considered.
An application can be started online, by phone, or in person at your local social security office. https://www.ssa.gov/benefits/disability/
Eligibility is based on two factors: financial situation and disability status. Disability, for SSI purposes, means that a person has a physical or mental condition that is expected to continue for at least a year or more, and prevents the person from holding employment sufficient to support themselves. Developmental disabilities frequently result in a disability for SSI purposes, but a diagnosis alone is not enough. Applicants must show medical, educational, or vocational evidence that they are not able to engage in meaningful work.
There are several types of information that may be needed to establish disability. Medical information, of course, will be needed - doctors, treatments, medications, etc will all be needed to establish that a physical or mental condition exists. The medical information will also establish the severity of the condition. In addition to medical information, some people may need to add other information in order to demonstrate that the person is not able to engage in meaningful employment. This could include documents from educational evaluations and special education reviews, information about attempts to engage in employment (if any), or statements from therapists and other professional providers.
If your child is under age 18, family income is considered when determining eligibility for SSI. If your child is 18 or older, ONLY the income the child earns is considered. Any support you provide in the way of housing or groceries is considered when determining your child's monthly SSI benefit, but family income is NOT considered to determine eligibility itself.

Rainman’s punitive estate plan: What did Sanford Babbit make absolutely right, and where did he go jaw-droppingly wrong

In the movie Rainman, Charlie Babbitt discovers he has an older brother with autism he never knew about after the death of their father, Sanford Babbitt. Charlie was three years old when his older brother Raymond was moved to a residential hospital for people with disabilities.  From then on, Charlie is raised by his widowed father without any knowledge of the existence of his brother.  Upon the death of his father and learning that he has been left almost nothing of the multi-million dollar estate he thought he was sole heir to, Charlie accidentally discovers Raymond, setting off a series of events that eventually lead to a full and tender relationship between the two brothers.

What did Sanford Babbit get right?

Sanford Babbit clearly consulted with a special needs law firm. He provided money for Raymond’s care, and he appointed a person who was well acquainted with Raymond to look after him.

Sanford understood that Raymond would need lifelong care and that he would need someone to manage and spend his money for him.  Upon his death, Sanford’s assets were placed in trust, and while we don’t specifically know from the movie whether it was a special needs trust or not, the money is clearly protected and designated solely for the care of Raymond.   The trustee chosen to handle the money is the doctor who has looked after Raymond for 30 years, so he is well-acquainted with Raymond, his needs, and also with the priorities of his father, an important aspect of ensuring that Raymond’s life can continue with little to no disruption.

What did Sanford Babbitt get wrong?

Basically, Sanford failed to consider the possibility and impact of conflict on Raymond’s life. This left Raymond unprotected in some important ways. He either did not do everything recommended by his special needs law firm, or he was working with a firm that did not have enough experience with special needs planning.

Sanford’s first mistake was in keeping Charlie in the dark about his brother. Certainly there is no law that says parents have to tell siblings about each other, not is there a law that requires parents to leave their estate to their children, but by letting Charlie think he was an only child, Sanford ensured that Charlie would be surprised, hurt, and probably angry when he discovered he had been essentially disinherited. Grief is difficult for people to deal with, and it tends to magnify feelings. The most common approach to inheritance is to divide the parents’ estate equally among the children, so anytime a parent intends to leave their property differently it is helpful to keep the kids informed beforehand. Removing the element of surprise allows the kids to work through any feelings about the distribution plan without the element of grief muddying things up.

If Charlie had known in advance about Raymond and known that the bulk of his father’s estate was going to be set aside to care for Raymond, his behavior and reactions would not have been so disruptive to Raymond, even if Charlie was unhappy about his father’s choices, he would have had an opportunity to deal with those feelings without blowing up Raymond’s life and safety.

Sanford also left Raymond vulnerable by not setting up a court appointed guardianship for him. It is understandable that he probably felt that was not necessary due to Raymond’s living situation and his protection from outside influences, but it was the failure to have a guardianship that allowed Charlie to take Raymond with him to Los Angeles. The doctor who was Raymond’s informal caretaker had no legal right to prevent Raymond from leaving and no legal way to prevent Charlie from leaving with him. If the doctor had been the legal guardian of Raymond, he would have had the ability to involve law enforcement officials to find and return Raymond to his home. Without that, the doctor had few options other than initiating a guardianship proceeding at that time, which of course is what ultimately happens in the movie when Charlie himself initiates the process in order to seek to have himself appointed as guardian. But Raymond was left unprotected and vulnerable in the interim.

And finally, Sanford erred by denying Raymond the ability to have a relationship with his brother Charlie. Even under guardianship, individuals generally have a right, to the extent they desire to and can exercise it, to maintain relationships with friends and family. A guardian does not have the right to isolate a person with a disability for reasons unrelated to the individual. Sanford’s appallingly awful relationship with Charlie was between Sanford and Charlie. Raymond had a seperate and independent right to have a relationship with his brother, which was denied to him by Sanford’s petty actions.

If you have questions about preparing for your own special needs child’s future, give Parker Counsel Legal Services a call or shoot us an email. legal@parkercounsel.com or 833-733-2668

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. legal@parkercounsel.com 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.

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 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 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.

If you need to do estate planning, or update a plan you did a while ago, we can help. To find out more, contact Parker Counsel Legal Services at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com