Category Archives: Special Needs Planning
Q. My ten year old son, Cole, was diagnosed with an Autism Spectrum Disorder (ASD) when he was six. He is in a class of 20 children and there are two other boys and a girl who also have an ASD, all ranging in severity. These children spend half the time in the typical class and half the time in special education. When I was growing up, the only person I knew with autism was my friend’s brother, who didn’t talk and was very anxious about being around others. Why is ASD so common now, as opposed to 30 years ago, and what can I and other parents do to plan for our special needs children?
A. Autism spectrum disorder, or ASD, is a group of developmental disabilities that can cause significant social, communication and behavioral challenges. ASD affects each person in different ways, thus their impairment can range from mild to severe, but all those afflicted with autism share problems with social interaction.
What we know now is that there is no one cause of autism just as there is no one type. Different genes increase the probability of a child developing autism. We know that children who have a sibling or parent with autism are at a much higher risk of also having the condition or another developmental disorder. Genes may be affected by advanced parental age at time of conception.
But why is autism’s prevalence increasing? Thirty years ago, the rate of autism was typically quoted as 4 in 10,000. The most recent rate reported is 1 in 50. This is an alarming increase from one in every 88 children reported by the Centers for Disease Control and Prevention just four years ago. Factors that have brought the startling levels of autism to our attention include:
- Better Understanding: Thirty years ago, autism was first introduced as a separate diagnostic category in the Diagnostic and Statistical Manual of Mental Disorders III (DSM-3). Prior to that time, clinicians using the DSM applied other categories such as childhood schizophrenia.
- More Awareness: Since the early ‘80’s, there has been extraordinary growth in awareness – both for professionals and parents. Pediatricians now screen for early warning signs, as do parents. These actions have all led to a much greater awareness of the symptoms of autism which has translated to more diagnoses being made. In addition, the increased awareness has permitted older kids to be diagnosed when the signs earlier in life were not recognized as autism.
- Expansion of the Symptoms: Diagnostic changes that recognized autism as a spectrum, now referred to as Autism Spectrum Disorder (ASD), have helped capture the wide range of symptoms that go beyond “classic” autism. These symptoms can include social, communicative, and repetitive/stereotyped behaviors. Since autism became a spectrum disorder, many youth were diagnosed who would not have been in past years.
- Changes in Etiological Factors: Less understood is the role of new causative factors that increase the risk for ASD. Much attention is being given to environmental factors and there is the suggestion that specific genetic mutations may be linked to autism.
Autism has come a long way in the past 30 years. We know now that autism is very common and that it may be influenced by genetic and environmental risk factors that are not well understood at this time. For these reasons, it is important for doctors, scientists, and awareness groups to keep researching the causes of autism, and to continue to promote awareness of the early signs and symptoms in order to support early diagnosis and intervention.
How can you plan for your son? More than $13 billion a year is spent to care for individuals with autism. For the average affected family, this translates to $30K per year. Many parents believe that needs-based programs such as Supplemental Security Income (SSI) and Medicaid will be enough to take care of their family members with special needs when they are gone. This is a common misconception.
SSI is the federal needs based program that many special needs children and adults may be eligible for if they meet certain income limits. Many special needs children and adults may also get Medicaid to pay for hospital stays, doctor bills, prescription drugs, and other health costs. However, once a person with special needs exceeds the $2,000 a year resource limit, he or she is no longer eligible for SSI or Medicaid.
Twenty million American families have at least one member with special needs, such as ASD, cerebral palsy, mental illness, blindness, and others. Parents of those with special needs are tasked with planning for their children throughout their lifetime, as many of them will outlive their parents but might not be able to support themselves and live independently.
We here at The Fairfax Elder Law Firm of Evan H. Farr, P.C., know that the majority of American families who have a loved one with special needs require a Special Needs Trust. These families typically have very little in tangible assets, second mortgages on their homes, and little to no savings (likely due to paying for the costly therapies). As a parent or guardian, you want to ensure that your child with special needs will remain financially secure even when you are no longer there to provide support. A Special Needs Trust is a vehicle that provides assets from which a disabled person can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses.
In your situation, you can create a Special Needs Trust to benefit Cole that provides instructions as to the level of care you want for him. After you are gone, the people you have chosen to manage the trust (trustees) can spend money on certain defined expenses for Cole’s benefit without compromising his eligibility for needs based programs.
We invite you to call 703-691-1888 to make an appointment for a no-cost consultation with The Fairfax Elder Law Firm of Evan H. Farr P.C. to learn more about special needs planning.
If you have minor children at home, you can expect an emergency card to arrive in just a few weeks from your child’s school or day care facility. The point of this card is to allow you to authorize certain people to pick up your child if you are not able to, for whatever reason. Plus it helps to ensure that your child is never sent home with a stranger “pretending” to be a close relative or a person who you do not want watching your kid. This is obviously an important safeguard, but as a parent, you may be interested to know what the emergency card does NOT do.
The Emergency Card does not authorize someone to temporarily take custody of your children if a SERIOUS accident happens during the school day. Keep in mind that by law, the authorities can only leave your kids with their “legal guardian” or surviving parent if something happens to you.
If you’re a mom or dad with one or more children at home under the age of 18, a Child Protection Plan may be the solution for your family. Without such a plan, if you are killed or incapacitated in an accident, the police will typically show up at your house to notify the family. If the police find your kids home alone, or with a babysitter, they will have no choice but to call in Child Protective Services and have your kids removed from your home until the system can figure out what to do, and that may take weeks or even months.
Again, if the surviving parent is unavailable or something happens to you both during school hours, your child will most likely be placed into the “system” until a judge (who doesn’t know you or your wishes!) can decide where they should go. That is NOT a position you want to put your kids in—especially during a time of grief! Fortunately, there are three easy steps you can take to make sure your kids stay protected if something tragic happens during school hours. They are:
1. Name short and long-term guardians for your minor children. Many parents have long-term guardians named in their will, but they have not legally documented who can care for their child in the short-term if the main guardian is out of town or is not immediately available to get your kids.
2. Make sure the contacts on your school emergency card match the guardians you have legally named to care for your kids.
3. Tell your child’s school, babysitter or daycare provider about the plans you have in place. Provide them with a copy of your guardian nominations and let them know how they can get in touch with your guardians in the event of an emergency. This will prevent social services from getting involved if the unthinkable happens.
A Child Protection Plan is a set of legal documents that includes an Appointment of Temporary Guardian for someone you choose to take immediate custody of your children, a Parental Consent for Medical Treatment form, and a Medical Information form containing information on your child’s medical allergies and conditions, pediatrician information, health insurance information, immunization record, and medication list.
If you are in an accident, your Child Protection Plan will help ensure that your children are never turned over to Child Protective Services because the police don’t have clear instructions from you and, if the unthinkable happens, your Child Protection Plan will help ensure that your children are not turned over to Foster Care strangers chosen by a overburden social services system that doesn’t care about your wishes or who you would prefer to take custody of your children.
By taking these three easy steps, you’ll rest easy knowing your child will always be cared for by the people YOU want if tragedy strikes. Don’t make the mistake of trusting completely in the school emergency card, as it’s not designed to fully protect your kids in the event of an emergency.
We are making progress! But we have a long way to go. You can track our progress by viewing our MDA page here, or alternatively, you can check back here (our blog) and we will periodically update our barometer.
UPDATE: The Farr Law Firm would like to extend a special thanks on behalf of the Muscular Dystrophy Association to our first two donors!
Thank You Ana A. and Mark R!
We still have a long way to go, as you can see from our Barometer
Please consider making a small donation by visiting our Firm’s MDA Fundraiser page.
The Farr Law Firm is participating in the MDA Fundraiser Walk on Saturday, April 2. We need your help!
Muscular Dystrophy is a group of genetic disorders that weakens muscles, makes it difficult to perform routine tasks like climbing stairs or playing with friends, and seriously limits what many children can do to enjoy life. The Greater Washington Muscular Dystrophy Association funds research, cares for patients, and even sponsors summer camps for children with the disease.
The Farr Law Firm supports organizations such as the MDA; our Firm takes great pride in helping families with Special Needs Children. For more information, please visit our site for Special Needs Planning, located here.
In addition to the children who suffer from Muscular Dystrophy and need our support, an increasing number of adults under the age of 65 are entering nursing home facilities as a result of neuromuscular diseases. Our recent article, posted on our National Blog, highlighted the fact that the number of young adults in nursing home facilities has increased 22% in just the last 8 years.
If you would like more information on how, when, and why to plan for the future in light of difficult life circumstances, please feel free to call us at 1-800-399-FARR and our team will be happy to assist you. If you would like to review our four levels of Family Protection Planning, we have made this information available for easy access on our website, located here.
PS: We will post all donors’ first name and last initial in a later posting to say thanks!
As Halloween approaches this year, I can’t help but draw an analogy between the nights I spent meandering my neighborhood as a kid looking for handouts, and our current economic times. I recall my grade-school friends and I operating our minds at their collective capacities, as we planned the best streets to target and the best routes to take to get from house to house most efficiently. Some of the parents surpassed expectations and gave out the good stuff — like king size candy bars! Others doled out the less-desirable treats, such as candy corns, smarties, or the dreaded raisins. Some neighbors, when they were gone for the evening, left out giant bowls of candy for us trick-or-treaters to help ourselves. Other neighbors were always gone, and their houses completely dark. But fortunately for us candy-loving kids, most or our neighbors participated in the fun of Halloween. In fact, many of our neighbors offered a variety of different candy to choose from each year. We never knew how much candy we’d wind up with at the end of the night, or how much of the “good stuff” we’d have in our bag.
Similar to the unpredictability of household Halloween generosity encountered by children, the Federal Government is providing the public with what can appropriately be called a “mixed bag” of economic solutions. It might just depend on what house, or rather, what state you live in.
Social Security and Supplemental Security Income recipients will not receive an increase in 2011 because there has been no increase in the federal Consumer Price Index. Read the Social Security News Release Here (released October 15, 2010).
Though the federal Social Security Administration is not able to provide an increase for its beneficiaries because of long-standing federal law that ties Social Security and Supplemental Security to the Consumer Price Index, other federal agencies, and some state agencies, are doing what they can to help alleviate the financial struggles of the elderly and disabled.
One prime example: the federal Administration on Aging and the Centers for Medicare and Medicaid Services (both part of the U.S. Dept. of Health and Human Services) recently awarded more than $2 million in grant funding to the Virginia Department for the Aging and the Virginia Department of Medical Assistance Services, the latter being the Virginia agency that runs our state’s Medicaid system. Read the Commonwealth of Virginia Press Release Here (released October 6, 2010).
This grant funding to Virginia’s Medicaid system comes with high hopes and great expectations. The over $2 million in funding will be used to bolster services for two key underprivileged groups – the elderly and the disabled – by alleviating burdens in the following areas:
• Prescription drug coverage
• Long-term care services
• Transition support from nursing homes to community based services
• In-home support services for sufferers of Alzheimer’s disease
In providing these much-needed funds to Virginia for the improvement of Virginia’s Medicaid program and the development of additional services for the elderly and the disabled, the Federal Government has demonstrated its continuing commitment to improving and strengthening the Medicaid system throughout the United States. As Senator Rockefeller wrote in 2005, on the 40th anniversary of the Medicaid program, ”taking care of our most vulnerable people is a moral obligation . . . our representative democracy has a responsibility to do for the future what we have repeatedly done in the past: protect, preserve, and strengthen Medicaid.”
Medicaid is what pays for the vast majority of nursing home care in the United States. With both the Federal Governemtn and the Virginia State Goverment now strenghtening the Medicaid program, smart long-term care planning (i.e., Medicaid Asset Protection Planning) has never been as important as it is now. According to the Virginia Department for the Aging, the population of elderly adults in Virginia will double in less than 20 years — to the point where one in five residents of Virginia is expected to be aged 65 or older.
A statistic I cited in a previous article demonstrates the importance of Medicaid Asset Protection Planning — about 70% of Americans who live to age 65 will wind up needing long-term care at some point in their lives. For the more than 40% who will require long-term placement in a nursing home, the cost of such care will be financially devastating without a smart Medicaid Asset Protection Plan focused on structuring assets in a way that protects those assets while allowing earlier Medicaid eligibility.
For most seniors over age 65, Medicaid is the equivalent of government-subsidized long-term care insurance, just as Medicare is governement-subsidized health insurance. But remember — the fact that Medicaid is “government-subsidized” does not mean that it’s a “handout.” On the contrary, it’s your tax dollars that fund the Medicaid program, just as it’s your tax dollars that fund Medicare. It’s also important to note that the Federal Government and Virginia State Government both encourage Americans to engage in smart Medicaid Asset Protection Planning — for example: there are laws that protect spouses of nursing home residents; there are laws that encourage Americans to engage in Medicaid Asset Protection by purchasing Long-Term Care Insurance “Partnership” policies; there are laws that allow the exemption of certain types of assets when applying for Medicaid; there are laws that permit individuals to qualify for Medicaid even after transferring assets to a spouse, or to a disabled family member, or to a caregiver child. To smartly plan and protect assets while accelerating qualification for Medicaid is no different than planning ahead to maximize your income tax deductions in order to minimize your income taxes. It is no different than taking advantage of tax-free municipal bonds. It is no different than planning your estate to avoid estate taxes (which, incidentally, a lot more people are going to be doing again next year when the Federal Estate Tax returns with a vengeance – with an Exemption Equivalent Amount of only $1 million – but that’s for another article . . . ).
At a time when much federal spending leads to controversy, Medicaid is an example of the government legitimately promoting the best interests of society. Similar to how my mom always made sure I ate a well-balanced dinner before embarking upon my annual October 31st sugar binge, our Federal Government and State Government are truly looking after the citizens of America (even in these gloomy economic times) by directing funds to programs that benefit and protect our most fragile citizens — the elderly and disabled.
The Farr Law Firm specializes in Family Protection Planning (i.e., Estate Planning, Incapacity Planning, and Medicaid Asset Protection Planning), and we are here to help you. If you have not yet done your Family Protection Planning, I encourage you to call us to take advantage of a free consultation to determine the planning solution that’s best for you and your family.
Social Security Disability (SSD) benefits are paid to individuals who, after having worked for many years, develop a disabling condition, prior to their normal retirement age, that is so severe that they are no longer able to work. Applicants for Social Security disability benefits often have to wait months, and sometimes years, for approval from the government, even if they are clearly eligible for benefits. However, in certain circumstances the Social Security Administration (SSA) will fast-track a disability benefits application through a process known as Compassionate Allowances, usually because the applicant is suffering from a severe disability that may be life-threatening. If an applicant is suffering from any of the conditions on the Compassionate Allowances list, his application is fast-tracked because it is presumed that he is a person with disabilities. This speeds up the application process and assists people suffering from serious conditions by awarding benefits quickly, when they are most needed.
When a person with disabilities submits an application for benefits, the SSA normally passes the application through a rigorous five-step process to ensure that the applicant truly needs assistance. The SSA first checks to see if the applicant is working, and then assesses whether the applicant is suffering from a “severe” medical condition. In the third step of the process, the SSA compares the beneficiary’s condition to a list of impairments that normally qualify a person for benefits without further assessment. When a person’s condition matches a condition on the list of impairments, the SSA presumes that the applicant has a disability and typically awards benefits without proceeding through the final two steps.
Unfortunately, most applicants typically have to wait for a long time before arriving at this third step in the evaluation process. Compassionate Allowances speed this process up by defining certain specific conditions that “obviously meet disability standards.” Prior to this month, the SSA included 50 medical conditions on the list of conditions that qualified for a Compassionate Allowance. As of March 1, 2010, the SSA has now added an additional 38 conditions to the Compassionate Allowances list, greatly expanding the number of people who are eligible for the Compassionate Allowances program.
Although most of the conditions on the revised list are rare, of tremendous importance for the aging population is the fact that the SSA has now included Early-Onset Alzheimer’s Disease, Mixed Dementia, and Primary Progressive Aphasia among the new fast-track conditions, meaning that people who are diagnosed with any of these conditions can now receive disability benefits very quickly. In addition to a monthly disability payment, qualification for SSDI also allows earlier entry to Medicare health insurance benefits for those under age 65. And for those under age 65 whose conditions are so severe that they must be placed in a nursing home, a disability determination from SSA also speeds up the Medicaid application process.
Please follow the links below to learn more about the Compassionate Allowance program:
Taking care of a loved one with special needs can be exhausting and stressful. Often due to the lack of outside help, a devotion to the person needing care, or the tunnel vision that can accompany exhaustion, caretakers don’t take care of themselves.
But they must. Failure to do so can lead to burnout, injury or illness. If you are the caregiver, any of these results will harm your ability to care for your loved one.
Here are some ways to take care of yourself and make sure you can take care of your loved one. The list is adapted from New York Times columnist Jane Brody’s excellent Nov. 17, 2008, column, “Caring for Family, Caring for Yourself.”
Make sure you stay healthy and have sufficient energy to do what you need to for your loved one.
Lack of sleep will sap your patience and reserves, making it more difficult for you to provide the care you would like to give your loved one.
While you may or may not be in this alone, you’re not the only one in this situation. Others are going through similar experiences. Here are sources for finding support groups: the National Family Caregivers Association (www.nfcacares.org) and its Community Action Network (www.thefamilycaregiver.org), and the Family Caregiver Alliance and its online support group (www.caregiver.org).
In order to access many of the programs that can help your family member, such as SSI and Medicaid, they will have to qualify financially. A special needs planning attorney such as Evan H. Farr can help you qualify for these benefits. For further information, please click here.
If you have already established an appropriate special needs trust for your child, then congratulations! You’ve taken a wonderful step towards ensuring that your child can take maximum advantage of the government programs available for his or her needs, while also providing your child with security for all the things the government can’t or won’t provide. Having gone through this process, assisted by a qualified special needs planning attorney of course, you may think that you’ve done your job to protect your child’s benefits, and in most cases, you have done a great deal. However, if you are thinking about moving to another state with your child, or if your child has grown up and is moving away from home, beware. Provisions in your child’s trust are almost always designed specifically for your current state of residence and may not work properly in your new home. Planning well in advance of your move will save you time, money, and a great deal of hassle, while helping to make your child’s transition as seamless as possible.
Once you have decided to move to another state, you should immediately contact a qualified special needs attorney in your future home state and discuss the steps you have already taken in regards to your child’s needs. You should also talk with the attorney who drafted the original trust documents, and put that attorney in contact with your new special needs planner. The new attorney will review the trust documents and let you know what, if anything, needs to change in order for the trust to function properly. Often, changing the trust can be as simple as executing a brief amendment or having the trustee sign off on slight changes. If your child’s trust was established by a court, which often happens as part of a personal injury settlement, you may need to obtain court approval for any substantive changes to the document. Furthermore, you may have to transfer authority over the trust from the court in your current home to a new court in your new state.
While Supplemental Security Income (SSI) is a federal program with a uniform benefit rate, many states offer additional SSI payments to beneficiaries. Parents need to be aware that their child’s benefit may be reduced or increased, depending on the state to which they are moving. As for Medicaid, it is both a federal and state program, and in some states, such as Virginia, must be applied for separately from SSI. So even though some types of Medicaid benefits (such as emergency care) in some states travel with your child, most Medicaid benefits don’t. In many states, your child will have to go through an additional application process in your new state, with different regulations regarding the treatment of your child’s trust’s assets.
The key lesson for any family choosing to relocate is to plan well in advance. Utilizing a qualified special needs attorney is the best way to familiarize yourself with your new state’s programs and laws, and to ensure quality, ongoing care for your child.
If you have recently moved to Virginia, Maryland or Washington DC, the Farr Law Firm would be happy to review your current Special Needs Trust to see if it is appropriate or if modifications are necessary, and also to assist you with applying for Medicaid in your new home state.
Divorce is a difficult process for everyone. If you have a child with special needs, the choices you make during a divorce can have lifelong repercussions, both for you and for the child. It is not always in the best interest of a child with a disability to receive a large award because child support could cancel the child’s SSI and Medicaid benefits.
But this is not the only problem child support creates for a child with special needs; a complicated process that the Social Security Administration (SSA) uses to evaluate household income can also wreak havoc with SSI and Medicaid benefits.
When a disabled child lives in a household with other people, the SSA takes into account the income of everyone who lives with the disabled child when it calculates eligibility for benefits. This is known as “income deeming.” The SSA applies a formula to determine what portion of the household income applies towards eligibility. If the total household income is too high, the disabled child can lose SSI and Medicaid.
In families going through a divorce, income deeming becomes especially important for two reasons. First, a child with special needs may have siblings who are also receiving child support from an absent parent. In these cases, that additional child support will count as household income and could place the SSI recipient’s benefits in jeopardy. Second, the choice of parent who will have custody of the child (the custodial parent) could throw off an SSI benefit if one parent’s household income is significantly different from the other’s. In many cases, loss of SSI benefits is not a key factor in choosing a custodial parent. But in other cases, especially when the child receives significant benefits from SSI and Medicaid, the choice of a custodial parent could make a tremendous difference for that child’s welfare.
If you or any of your loved ones are going through a divorce, Evan Farr can help you understand these complex income deeming regulations and will work with your divorce attorney to make sure that child support will not adversely affect your child’s future.
How can you ensure that your special needs child will remain well cared for and secure once others assume the role of guardian or caregiver? While creating a financial plan and establishing a specialized trust are central to preparing for your child’s future, special needs planners also advise families to write down their intentions and expectations in a document referred to as a Memorandum of Intent or Letter of Intent.
The Memorandum is not legally binding and, when directions conflict, those in wills, trusts and other legal documents take precedence. But for “non-legal” matters, it will serve as the primary source of information about your child, providing a roadmap for the courts, guardians, caregivers and others involved in your child’s life. That can be critical in easing your child’s transition, ensuring continuity of care and treatment, as well as appropriate decision making regarding living arrangements and other lifestyle choices.
Topics that can be included in a Memorandum, include the following:
- Individuals and organizations that should be contacted upon your death or incapacity
- Your child’s health care and therapeutic needs
- Your preferences for education, religion, and child-rearing practices
- Contact information for doctors, therapists and teachers
- Your child’s personal history, degree of independence or mobility, behavioral issues, and need for assistive technologies
- Your child’s interests and personality traits
- The location of medical records and other important documents.
While writing a Memorandum of Intent can be time-consuming and emotionally taxing, it’s very important not to postpone this task. Once the Memorandum is complete, place the original in a secure location and distribute copies to others involved in your child’s life. Then, mark your calendar, setting aside time to revise the Memorandum at least once a year so it will continue to reflect your child’s current life stage and situation.
The Farr Law Firm can help your family with drafting an appropriate Memorandum of Intent, and also with drafting appropriate Wills, Trusts and other legal documents needed by parents of children with special needs.
Please click here for a sample Memorandum of Intent from the Academy of Special Needs Planners that parents can fill out on their computer.
For further information about a Special Needs Planning, click here.