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.
For many seniors the equity in their home is their largest single asset, yet it is unavailable to use unless they use a home equity loan. But a conventional loan really doesn’t free up the equity because the money has to be paid back with interest.
A reverse mortgage is a risk-free way of tapping into home equity without creating monthly payments and without requiring the money to be paid back during a person’s lifetime. Instead of making payments the cash flow is reversed and the senior receives payments from the bank. Thus the title “reverse mortgage“.
Many seniors are finding they can use a reverse mortgage to pay off an existing conventional mortgage, pay off debt or help pay for home repairs, remodeling or long term care needs.
“The lender could take my house.” The homeowner retains full ownership. The Reverse Mortgage is just like any other mortgage; you own the title and the bank holds a lien. You can pay it off anytime you like.
“I can be thrown out of my own home.” Homeowners can stay in the home as long as they live, with no payment requirement.
Virtually anyone can qualify. You must be at least 62, own and live in, as a primary residence, a home [1-4 family residence, condominium, co-op, permanent mobile home, or manufactured home] in order to qualify for a reverse mortgage.
There are no income, asset or credit requirements. It is the easiest loan to qualify for.
The amount of reverse mortgage benefit for which you may qualify, will depend on your age at the time you apply for the loan, the reverse mortgage program you choose, the value of your home and current interest rates. As a general rule, the older you are and the greater your equity, the larger the reverse mortgage benefit will be (up to certain limits, in some cases).
The reverse mortgage must pay off any outstanding liens against your property before you can withdraw additional funds.
The loan is not due and payable until the borrower no longer occupies the home as a principal residence (i.e. the borrower sells, moves out permanently or passes away). At that time, the balance of borrowed funds is due and payable, all additional equity in the property belongs to the owners or their beneficiaries.
The most popular reverse mortgage plan is the HECM. (Home Equity Conversion Mortgage) Over 90% of all reverse mortgages are HECM contracts.
You must participate in an independent Credit Counseling session with a FHA-approved counselor early in the application process for a reverse mortgage. The counselor’s job is to educate you about all of your mortgage options. This counseling session may charge a fee to the borrower and can be done in person or, more typically, over the telephone. After completing this counseling, you will receive a Counseling Certificate in the mail which must be included as part of the reverse mortgage application.
You can choose 3 options to receive the money from a reverse mortgage:
The most popular option, chosen by more than 60 percent of borrowers, is the line of credit, which allows you to draw on the loan proceeds at any time.
Keeping money in a reverse mortgage line of credit in most states will not count as an asset for Medicaid eligibility. It is best to get an opinion from an Elder Attorney in your state.
Tom MacDonald, in his article on “ReverseMortgageconsultant.com”, makes the following statement about Medicaid, Med-Cal or SSI requirements:
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.
The Farr Law Firm is making progress raising funds for the April 2nd Muscular Dystrophy walk being held in Fairfax, Virginia, but we still have a long way to go. Below is our current barometer reading. To make a donation, please click here. We will post all contributors by first name and last initial on our heavily viewed Virginia Elder Law blog here (unless you would prefer to stay anonymous, of course). Thank you in advance for your generosity!
And if you are a parent of a Special Needs Child (or know someone who is), you may be interested in reading about Special Needs Estate Planning.
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!
Please consider making a small donation by visiting our Firm’s MDA Fundraiser page.
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!
Did you know that in the U.S. alone, about 200,000 people under the age of 65 require long term care? In the D.C. Metro area, about 40,000 children are considered “Special Needs.”
Many families are unsure how to plan financially when they first are faced with news that a child with special needs is on the way. More on that later — first we’d like to point out a state-of-the art facility called Jill’s House that is creating quite a buzz locally:
Jill’s House will offer an exceptional experience for children with special needs. There will be activities within the music, art, and computer rooms; in the indoor pool; on the outdoor playground; and within the three unique lodging areas all designed especially for children with special needs. – Jill’s House
For parents and caregivers of Special Needs children who require either short and intermittent care or long term care, everyday tasks can be draining. If day-to-day efforts seemingly go unnoticed, remember the words of poet Heather Cortez, “To the world you may be one person, but to one person you may be the world.”
What qualifies a child as a “Special Needs” child? The term is used broadly as illustrated by this information guide: “Pick any two families of children with special needs, and they may seem to have little in common.”
Parents of Special Needs children need to plan for their financial future carefully, although when faced with shocking news regarding a child, it is completely normal to be in an emotional state of disarray. Meet Jason and Amanda:
Jason and Amanda Purnell met while getting their Ph.D.s in psychology at Ohio State, married in 2007, and were ecstatic when Amanda became pregnant shortly before they moved to St. Louis last July to be near family. Then they learned that their 22-week-old fetus had Down syndrome. They were shocked — at 29, Amanda was well below the at-risk age to conceive a baby with this condition. “The first 24 hours, I was inconsolable.
“We know we’ll be financially supporting Maya for the rest of our lives,” Jason tells CNN.
What should a Special Needs family do to prepare? At least three measures should be strongly considered, some obvious and others not so obvious: Save as much money as possible, plan for 3 retirements, and consider a special needs trust.
For example, the family mentioned above created a trust but it won’t be operational until both spouses are dead. This can be problematic if friends or family members want to contribute to the child’s care during her life. This can be accomplished through a special-needs trust and can even work without risking the loss of federal disability benefits.
For much more information on Special Needs trusts, click here.
“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”
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: