More Research Needed for Teen Autism Treatments

Most of the research in autism treatment and prevention is aimed at young children. Early intervention is best and most helpful, but as the autism population ages, so must treatment solutions be aimed at older children and young adults.

As the Huffington Post points out, a new government report confirms that there is little scientific evidence that any of the treatments or interventions used in older children or young adults have any efficacy.

The lead author found there was a “dramatic lack of evidence for any kind of interventions.”  In my reading, however, the study did not say the interventions did not work, only that there was no evidence.

More research needs to be done.  We need to know if the interventions currently being used to help young adults enter the work force are effective, and if not, how we can help those young adults become productive members of society.

Chalimony: When Divorce Meets Special Needs

As many parents of special needs kids know, raising a disabled child is much more expensive than raising typical children. I have previously discussed some of the extraordinary costs in my post on Divorce and Special Needs Children. Many states mandate that parents of a disabled child continue supporting these children, even after they are no longer minors. New York does not follow this mandate, allowing the state to support our disabled children instead. However, if the child is living with a divorced parent, then that parent often has to shoulder many of the costs — with no contribution from the other parent. After the child reaches the age of 21 in New York, there is no way to force that other parent to shoulder any of the financial burden.

An Amazing Statistic

Karen Czapanskiy, a Professor at the University of Maryland School of Law, has proposed a solution she calls “Chalimony” . She states “Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents.”

That is astounding. But it is understandable. Many of us put our careers on hold to take care of our children, to drive them to doctor and therapy appointments, to ensure they are cared for properly. Even after the children are grown, even if many of them do not need hands-on care anymore, there are years missing from career paths.

Czapanskiy suggests: “[Chalimony] would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child’s special needs. The child’s other parent could avoid paying chalimony if he or she were meeting enough of the child’s needs to permit the primary parent to work full-time.”

I would take it a step further. Any parent who has stayed home with a special needs child and missed out on the opportunity to advance a career, also deserves chalimony.

Should We Celebrate Mental Illness Awareness Week?

The National Alliance on Mental Illness (NAMI) celebrates Mental Illness Awareness Week (MIAW) during the first week in October.  In 1990, the U.S. Congress established MIAW in recognition of NAMI’s  efforts to raise mental illness awareness.

MIAW has become a NAMI tradition. According to NAMI, the week “presents an opportunity to all NAMI state organizations and affiliates across the country to work together in communities to achieve the NAMI mission through outreach, education and advocacy.”

The Good

Honoring the challenges encountered by those with mental illness and celebrating the achievements of loved ones with mental illness is certainly cause to celebrate.  The opportunity to raise awareness of mental illness promotes early intervention and exposes discrimination.  Other organizations also celebrate this week to promote their own interests.  Thursday, October 7, 2010 is designated as Bipolar Disorder Awareness Day.  The National Day of Prayer for Mental Illness Recovery and Understanding falls this year on Tuesday, Oct. 5, 2010.  These organizations believe  promoting Mental Illness Awareness Week is an opportunity to change attitudes and to raise money to promote further awareness.

The Bad

How could raising awareness of mental health and celebrating achievements be negative in any way?  Several strong stances have been taken against celebrating this week.  In an article well worth reading in full, DJ Jaffe suggests that hosting an event to reduce the stigma of mental illness is the wrong way to  look at this.   He states there is no stigma to mental illness, only discrimination.  He suggests that attempting to reduce stigma is detrimental because it diverts attention away from a significant issue; the most seriously mentally ill.

The International Center for the Study of Psychiatry and Psychology, Inc. takes issue with NAMI’s emphasis on psychiatric medication and main stream psychiatry.  They suggest that NAMI’s approach to psychiatric medication used on adults and children may do more harm than good.

What Do You Think?

Raising awareness of mental illness is important to me.  I also believe that mental illness should not be considered a stigma, anymore than race or religion is.  As a parent, I welcome any research into using psychiatry to lower medication use, but resent being made to feel that I am giving a child medication to make my life easier.

Where do you stand on Mental Illness Awareness Week?

The Difference between Medicaid and Medicare

Previously, I discussed the differences between Social Security Disability Income (SSDI) and Supplemental Security Income (SSI) .  Two other government programs that frequently confuse people, including professionals, are the differences between Medicaid and Medicare.


Medicare is a health insurance program for persons over the age of  65 and for those with certain disabilities who receive SSDI. A person must have entered the United States legally and have lived here for five years before becoming eligible for these benefits.

It is extremely important to understand that Medicare does not cover long-term nursing home care.


Medicaid is funded jointly by the federal and state governments.   Under certain circumstances, Medicaid will provide benefits for nursing home care.  In New York and a number of other states Medicaid will pay for home health care for those in need.

Medicaid is for those with low income and minimum resources.  Among those with low income who are eligible are:

  • pregnant women
  • children under 19 years of age
  • people 65 and older, blind or disabled
  • in need of nursing home care

A disabled person in New York would apply for Medicaid through the state agency.  Here in Nassau or Suffolk County, the application is available from the Department of Social Services.

It is a very complex and difficult application.  Many people retain the help of an elder care attorney to aid them in applying for Medicaid.  If you need assistance, please contact me by calling  (516) 223-4800 or by filling out the contact form on this website.

The Difference Between SSI and SSDI is More than Just a Letter

Many people, including lawyers, confuse two very different government programs for disabled persons.  Although both are overseen by the Social Security Administration (SSA), there are some significant differences  both in how the programs are funded, and to whom  the money is distributed.

Social Security Disability Income (SSDI)

SSDI is a program for disabled persons.  It has no means test.  In other words, there is no investigation into, or requirement based on, your finances to determine if  you qualify for the program based on your income. You can receive SSDI if you have a physical or mental condition which prevents you from working for at least 12 months, or a disabling condition likely to lead to your death.  Eligible candidates must be younger than 65 and have worked 5 out of the last 10 years.

A disabled person is eligible to receive Medicare after two years of receiving  SSDI.

A person’s dependents are eligible to receive dependent’s benefits under SSDI.

Supplemental Security Income (SSI)

SSI is a means-tested program, which means qualifying for SSI is based on financial need and not work history.  You must be blind, disabled or over the age of 65 to qualify.  Additionally, you must have under $2,000 in assets and limited income.  Children who are blind or disabled may also be eligible to receive SSI.

A disabled person on SSI is entitled to also receive Medicaid.

A person’s dependents are NOT eligible to receive SSI.

Dual SSDI and SSI

If a disabled person has worked enough to receive SSDI, but the benefit amount is less than the SSI amount, SSI will give you enough to equal the SSI monthly amount.

You can own your own home under both programs, however under SSI you must live in it, and you will not be paid the part of your SSI earmarked to go towards housing expenses.

You can work under either program,  but the rules are very different for each program.  It is especially important to know how many hours you can work under SSI before you lose your benefits since most people who receive SSI also receive Medicaid and cannot afford to lose their  medical benefits.

Special Needs Trusts and SSI

If a disabled person is receiving SSI and receives a windfall by either a personal injury settlement or an inheritance, that beneficiary must establish a Supplemental Needs Trust to protect the SSI government benefit.  Since SSDI is not means-tested, an SNT is unnecessary to protect you from losing your SSDI in the event of receiving a lump sum payout.

Why Use a Special Needs Pooled Trust?

When is it appropriate to choose a pooled supplemental needs trust instead of an individual special needs trust?

A pooled trust has many of the same purposes as an individual supplemental needs trust.  A pooled trust is established to provide for a beneficiaries’ supplemental needs without jeopardizing the disabled person’s government benefits.

Funds that are held in a pooled trust are available to pay for items not covered by Medicaid and SSI, including certain medical benefits.

What is a pooled trust?

The most important feature of a pooled trust is that it must be run by a not-for-profit organization. Although the assets of disabled persons are “pooled” for the purposes of investment, separate accounts are maintained for each individual beneficiary.

The pooled trust divides any earnings from its investments among the individual sub-accounts according to the percentage of assets each individual sub-account contains.

Additionally, unlike an individual special/supplemental needs trust, a pooled trust can be established for a disabled person over the age of 65.  However, any transfer of funds to a pooled trust by an individual over the age of 65 is subject to the Medicaid transfer rules.

The pooled trust is administered by a trustee who is very familiar with all the different rules and regulations of the different government benefit programs.  The trust handles requests from the beneficiary for disbursements, maintains records and reports to the various agencies that might be affected by those disbursements, and prepares tax reports.

A pooled trust offers professional management and investment by working closely with a bank or other financial institution.  Some pooled trusts coordinate care for their beneficiaries, and then pass that cost along to the beneficiary through the sub-account of the disabled person.

What types of pooled trusts are there?

  • Third party–these trusts are set up with the assets of the parents or others that do not belong to the disabled person.  The state Medicaid does not have to be reimbursed or paid back, instead the remainder can go to heirs or other organizations.  Usually the pooled trust keeps a certain percentage for the benefit of other disabled persons.
  • Self settled–This is a payback trust, much the same way an individual SNT.  However, instead of payback to Medicaid after the disabled beneficiary dies, any remaining assets are kept by the trust for the benefit of other disabled persons.
  • Income only–this is a special type of pooled trust whereby a Medicaid applicant who earns more than the allowable income can put the excess income in pooled supplemental needs trust in order to qualify for Medicaid.

When Would I Choose to Use a Pooled Trust?

It is worth considering a pooled trust instead of an individual special needs trust if the amount in the trust is small so that it would be difficult or impossible to find a corporate trustee to help with the management of the trust.  Or perhaps no one is able or willing to serve as trustee of yours or your child’s trust.  Perhaps you have no heirs to leave the trust to after the disabled person dies and you would like to see the remainder used towards other disabled persons.  These are all great reasons to use a pooled trust instead of an individual supplemental needs trust.

How Can I Help?

There are a number of different pooled trusts in New York with different fee structures and different abilities to personally handle your needs.  Please call me if you are interested in learning more about the various pooled trusts and why this might be a good option for your supplemental needs in order to become or to stay eligible for public benefits.

Are Schools Prepared for an Increase in Autism-Related Special Needs?

The reported rate of autism spectrum disorders (ASD) has significantly increased and is now expected to affect 1% of children ages 3 to 17, or approximately 1 in every 100 children, according to two recent major studies.  Both the Centers for Disease Control and Prevention (CDC) and a study published in the journal Pediatrics indicate that the reported rate has increased from previously reported levels of 1 in 150 persons.  Even more alarming, boys are four (4) times more likely to have ASD than girls of the same age, which means that the likelihood of having a boy with ASD is around 1 in 60, a staggering number.  The second government study conducted by the Health Resources and Services Administration used data from the 2007 National Survey of Children’s Health.

Some researchers urge caution when interpreting the new numbers, suggesting that the reported increase is due to increasing awareness of the symptoms, as opposed to an actual increase in diagnoses.  Additionally, according to the children’s parents, many of the reported cases are mild forms of the disorder. Controversial author David Kirby questions this theory at the Huffington Post.  He asks if the actual rate of autism in children has not increased, how is it possible that as adults we have not noticed that 1 in every 60 adult males we come across has some form of ASD?  Kirby adds anecdotal evidence from long-term teachers and special education administrators who cite their long years of experience in refuting the notion that reported increases in autism related disorders are merely a function of greater awareness.

As many parents and professionals know, autism and related disorders such as Asperger’s and pervasive development disorder can be a frustratingly difficult diagnosis to make as it can only be made based on behavior instead of by more objective means such as a blood testing.  These behaviors include difficulties with social interaction and communication and are often accompanied by repetitive behavior.

However, whether the increase is due to better reporting or an actual upsurge, better informed parents and doctors mean more parents demanding educational and other services.  As this population ages, there is no doubt that both the government and private sectors must be prepared for an escalation in demand for supportive housing, employment, social and financial support.

According to CNN and the Associated Press, Dr. Tom Insel, director of the National Institute of Health, stated that the federal government is increasing resources to address autism and related disorders, adding millions of dollars for autism research, screening and treatment and adds that President Barack Obama has made autism research a priority.

It is more important than ever to plan for the future of our disabled children.  We should not depend solely on government support to financially support our disabled children, whether diagnosed with an autism spectrum disorder or any other type of disability.  Just as our federal and state governments need to prepare financially for the influx of disabled children into the school and health care systems, parents need to make estate planning a priority to ensure the financial well-being of the disabled population as soon as possible.

Action Plan–8 Weeks to a Letter of Intent

Comprehensive planning for your child with special needs includes both legal planning to ensure financial security and information-gathering in order to write a guide for future caregivers.  My hope is to alleviate some of the worries and unique concerns parents face when thinking about the future of their special needs children.

The Letter of Intent is intended to be the place for you to be clear about your intentions for your child’s future.  The place for you to share the benefit of your knowledge about the daily needs and routines of your child.  A place to share your hopes and desires for their future.  A place to gather all the pertinent medical information and contact information of those that are most important to the health and well-being of your special needs child.

Creating a document that encompasses so much information is a labor of love.  Perhaps you have already been keeping good records, however, I suspect for most of us it has been all too easy to put off this task.

I propose that over the next eight weeks, we begin the process of what will be a continuing journal of both yours and your child’s hopes and dreams.  Why so long?  Much of the medical information may take time to gather.  You may have to dig through some old records and storage boxes.  You may need to contact some people to ensure they wish to be included in your child’s future plans, or find out who might be able to succeed them if they are no longer available.  These are important conversations, and should not be rushed.

I’m going to take this journey with you.  There’s a saying about how the shoemaker’s children have no shoes.  I have to admit I have not yet written my Letter of Intent.  I understand just how difficult and time-consuming a task this is, therefore I’m not going to ask you to do anything I am not going to do myself.  I can promise we will all sleep just a little better after completing this task.

On a practical level, if you are reading this, you have access to a computer.  Word processing software makes it easy to create a Letter of Intent that is simple to update annually or after any major change in either yours or your child’s life.  I suggest printing it out after it is finished or revised and leaving a copy with your other legal papers.

Finally, anyone who comes into my office for a consultation will leave with a CD which includes a pre-printed Letter of Intent form which can simply be filled in with your personal information and printed from your computer.  Please call me at (516) 223-4800 to make an appointment to discuss your planning needs.

New York State’s New Power of Attorney

What is a Power of Attorney?

A Power of Attorney is a powerful and important legal document delegating authority from one person to another.  It allows the agent you’ve appointed to make financial decisions on your behalf.  The person giving the authority is known as the principal, while the person to whom the authority is given is known as the agent or the attorney-in-fact.  The term “attorney-in-fact” does not mean the person is a lawyer.  You can give very broad authority to your agent, or you can limit the authority you are granting to certain specific acts.  The power of attorney deals only with financial matters.  In order to give another the authority to make medical decisions on your behalf, you will also need to sign a health-care proxy.

A power of attorney is a very effective tool should the principal becomes incapacitated and unable to act for themselves.  If you do not have a durable power of attorney in place should you become incapacitated, your family may have no choice but to file for guardianship, an expensive and time-consuming process.   Signing a power of attorney and health care proxy allows you to make the decision as to whom you wish to act as your agent, while a conservatorship or guardianship leaves the decision-making up to a court.

New York States’ New Power of Attorney Form

On September 1, 2009, significant changes to the New York Power of Attorney (POA) laws went into effect.  These changes relate to both the content and administration of the statutory short form power of attorney.

All powers of attorney signed prior to this date remain valid unless revoked.

By default, anyone executing a new Power of Attorney will automatically revoke any prior POAs.  Attorneys and principals alike should be very careful when executing the new form.  The new POA may and should be modified to specifically state that prior powers of attorney should not be revoked.

By way of illustration, if you already have a signed and notarized durable power of attorney for estate planning purposes and for use in case of future incapacity, any future  limited use POAs you execute must be modified so that the durable POA is not revoked.  Some examples of limited powers of attorney include those used for the IRS, real estate transactions and car leases.  Similarly, if you already have a POA being utilized for a limited purpose, the durable general POA should be modified before it is executed so that your limited POAs are not revoked.

Another significant change to the New York POA is that the new form requires that both the principal and the agent must sign in front of a notary public before it becomes valid.  This forces the agent to acknowledge their fiduciary duties.  Many principals do not wish their agent(s) to know that they have been granted this power until it is needed; however, the agent does not have to sign concurrently.  The form can be held at your attorney’s office until needed (in the event of your incapacity) at which point the agent can sign and notarize the POA to make the form effective.

The new short form also allows you to designate an independent monitor and gives the monitor authority to request records of all transactions made on the principal’s behalf.

The New York Statutory Major Gifts Rider

Should a principal desire to give their agent the ability to make property transfers and major gifts (more than $500) an additional form is required,  the Statutory Major Gifts Rider (SMGR).  Both forms must be signed concurrently.  Additionally, the SMGR must be signed in the presence of two witnesses and notarized in order to be valid.

The new statutory short form power of attorney and rider is designed to enhance protection of the principal (the person granting the power).   While the principal may still grant the ability to give major gifts and property transfer power to the agent, the new comprehensive form requires the principal to initial each different category of gift-giving authority and forces the principal to specifically name beneficiaries or a class of beneficiaries other than his/her spouse, children or parents.  This serves to give the principal adequate notice that the power they are granting is expansive.  All gifting powers must be specifically designated and consented to in the SMGR.

Without a properly executed POA and SMGR, the agent will have no authority to:

  • Make gifts to themselves
  • Add, delete, or change beneficiaries on insurance policies
  • Add, delete or change beneficiaries on retirement accounts
  • Make changes to joint or totten trust accounts
  • Gift more than $500 per donee per year

Additionally, the ability to give annual gifts is further categorized into (a) the amount of the gift tax exclusion (currently $13,000) or (b) the authority to make gifts and transfers in excess of the annual exclusion.  Those principals with children who have Special Needs Trusts are cautioned to include language that the agent is not required to make annual exclusion gifts.

Better to Have, Than Have Not

You should, of course, choose your agent carefully.  The best person is a close family member, preferably one who lives nearby.

Despite the feelings of vulnerability and need for trust when designating an agent in a power of attorney, executing the power will also bring peace of mind to both you as the principal and family members.

If you have been through a divorce since you signed your original power of attorney that POA has been automatically revoked and you will need to execute a new one.

Signing both the POA and SMGR allows your agent in the event of your incapacity to continue to fund college-savings plans for your children and grandchildren, make charitable bequests, convert traditional IRAs to Roth IRAs, and gives your agent access to electronic records that are password protected.

Clearly, New York States’ new Power of Attorney and Statutory Major Gift Rider are complex, powerful tools.  Although you are not required to use an attorney to execute these forms, seeking the advice of a qualified attorney may help you to understand the broad powers you are granting.