Autism Resources - Latest Articles

Autism Resources: Individualized Life Planning Team

Charles Massimo — Mon, 13 Feb 2012 20:51:00 GMT

When parents are faced with an aging child on the autism spectrum or with special needs, their first concern is, “How will my child care for themselves when I’m gone?” An article “Disabled Adults, Likely to Outlive Parents, Face Unclear Future” even states, “The prospect of disabled adults outliving aging parents is a demographic time bomb”. Studies show that an overwhelming number of these parents, roughly 78% do not have an Individualized Life Plan in place. Worse yet, 70% of all parents do not use a professional to help develop one. Approximately 56% of these parents do not even know of any financial professional who even deals with these types of issues.

An individualized life plan (ILP) can provide access to information, specialists and financial solutions that can help improve the quality of life for people on the spectrum or with other disabilities. The focus of everything is on the person with the special needs. Ultimately, the result is a plan that is developed in collaboration with the family and enables the person to obtain the best quality of life while preserving much-needed government benefits. The family will work with a team of advisors since no one professional can provide everything a family needs. Building the right team of advisors is a key step and at the reins should be an experienced financial advisor or wealth manager.

A wealth manager will provide personalized attention. When that client is a parent of a child with autism, the individualized attention is even more pronounced. When selecting a wealth manager, parents should seek out a professional who has the proper credentials and experience working with families with spectrum children, and also the resources in place to provide a complete, holistic service. These resources include strong working relationships with other key team members that may be needed by the family, such as:

A banker
An insurance consultant with experience in special needs planning
A CPA to address tax-related issues
An estate planning attorney who concentrates in special needs families and has experience serving families with an autistic member
A case manager to serve as an advocate for the family and autistic child upon adulthood

Although many families may already have a lawyer, broker, or accountant, an important question to ask is whether or not these individuals have specific expertise and experience serving families with autism. If the answer is no, while it may be difficult to change a trusted advisor who has served the family for many years, it should be done to best protect the family and child’s long-term interests. The team will work in concert to review the family’s complete financial picture and offer options that make the most sense. A wealth management plan will be developed along with the ILP. At the core of the wealth management plan should be vehicles designed to accumulate and preserve wealth. Members of the professional team will lend their individual expertise to guide the design of a wealth distribution, accumulation and preservation plan that includes a special needs trust, education plan, housing plan, retirement plan and risk management vehicles(i.e., insurance and legal needs relating to the special needs of the individual on the autism spectrum)

“Disabled Adults Likely to Outlive Parents”, also points out that people with special needs are living much longer and they are staying in the community, which means that parents have to plan well in advance for the inevitable day when they will be unable to continue caring for their aging children. Preparing for a solid financial future can help provide peace of mind for families now and when they can no longer care for their children with special needs later.

Autism Costs: Additional Financial Burden for Parents

Charles Massimo — Fri, 20 Jan 2012 17:56:00 GMT

An article in the NYT, “New Definition of Autism Will Exclude Many, Study Suggests”, highlights the effects of proposed changes to the definition of autism. This will greatly impact the cost of autism for parents with children on the spectrum making it harder for them to qualify for governmental assistance. “At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset (autism’s) disabling effects…”. The outcome would most likely prevent higher-functioning individuals from being eligible for any programs or aid.

While I do understand autism is over diagnosed, this will just be another way for the government to try and put a large part of the financial burden back on the parents. Many of them already cannot afford the proper type of care needed for our children on the spectrum. According to one recent study by Harvard, the average life time costs of caring and raising a person with autism is $3 million; a cost the government wants very little to do with. There are at a minimum, a million children and adults that have a diagnosis of autism or a related disorder such as Asperger syndrome or P.D.D.-N.O.S.(pervasive developmental disorder-not otherwise specified). “The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D-N.O.S. from the manual. Under current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu.”

For many parents, managing the day-to-day activities and needs of their spectrum child is overwhelming enough. When it comes to the financial burdens presented by autism, the challenges can seem insurmountable. Parents faced with the notion that their child may not qualify for benefits because of impending diagnostic changes can be financially devastated. With that said, it is more important than ever parents of children with autism are realistic about the costs involved. Only about 12 % of parents with children on the spectrum feel their children will be able to feasibly manage their own day-to-day finances. Unfortunately even though parents recognize the need for a long-term plan, many families are overwhelmed by the challenge. Many parents report that an integrated life care plan is hard to find and confusing. For example, less than 20% of parents with children with ASD have created a special needs trust.

Ideally, families should devise a comprehensive individualized life plan that encompasses basic needs and strategies for achieving the best short- and long-term quality of life in every area-food, clothing, shelter, health, finances, family life, entertainment, employment retirement and more. If a new definition of autism is accepted, more and more parents will find themselves faced with added costs. Exploring an Individualized Life Plan (ILP) can be the first step in alleviating the financial strain associated with caring for an individual on the spectrum.

Autism Resources: ILP Development & The Right Wealth Manager

Charles Massimo — Fri, 16 Dec 2011 15:58:00 GMT

A living with Autism study found that 56% of parents did not know of any financial professional who specializes in addressing their needs. Autism resources can be lacking when it comes to identifying a wealth manager who will have the right fit. Parents ow children on the spectrum should seek out a professional experienced and well-informed in the development and management if Individualized Life Plans(ILPs). The ILP is the financial/life plan equivalent of a child’s Individualied Educational Plan(IEP). While it’s not easy to find someone who understands the unique financial needs of families with children on the autism spectrum, below are questions parents can use as a guide when selecting a wealth manager.

• What made you decide to provide financial and wealth management advice to families of children with autism?

• What percentage of your clients fall into this category?

• Do you work with other professionals whose expertise I may need to prepare a will, guardianship agreement, estate plan or revocable or special needs trust? Will we have the opportunity to meet and interview these other professionals?

• We have a longstanding relationship with our attorney and accountant and really do not want to change. Is there any way you can work with them in creating the right financial plan for our child and family?

• Our family has a very complex asset situation. Is it necessary that all of our assets be transferred under your control?

• How often will we meet?

• What investment philosophy do you follow to assure our assets will be preserved but still have room for growth?

• If something happens to you, who will take over managing our plan?

• Who else is on your staff and what are their qualifications?

• Do you put your plan in writing for us?

• How can I be sure our money is safe and not exposed to a fraudulent investment scheme or Madoff-like firm?

• We recently relocated to this area. Can you help guide us in accessing other non-financial resources to help our child and family?

• Do you have relationships with doctors who specialize in autism spectrum disorders? Do you have relationships with speech therapists, occupational and physical therapists, psychologists and social workers?

• What about government benefits? Can you explain how they work and assist us in accessing these benefits for our child?

• In addition to reports regarding our wealth management plan, can we expect to receive information and news regarding important developments affecting individuals and families with autism?

• Are there any families you currently serve who would be willing to speak with us about their experience working with you?

The right wealth manager will be consultative, relationship-driven and proactive in approach rather than transaction-oriented and reactive. The ILP he or she creates for an autistic child will also address the concern that keeps every parent of a spectrum child up at night: how will my child be cared for when I am no longer here to do so?

Parents of Children with Autism: 6 Fears for Their Child

Charles Massimo — Tue, 13 Dec 2011 15:35:00 GMT

Parents of children with autism face fears everyday while coping with the challenges, frustrations and considerable expenses associated with caring for their child. These concerns cover every aspect of the child and family’s life, from their child’s health, happiness, independence and education to their social needs, housing, employment and overall quality of life. My first-hand experience has shown me that families and parents of children with autism face these common fears for their child.

1. What about their future? Few parents believe their child with autism will be able to make their own life decisions, establish friendships, have a spouse, participate in age-appropriate activities and recreation, etc. Not only that, many parents are concerned about their child’s ability to find work or access to transportation. Fears about their child’s ability to continue to receive proper care in their absence can leave parents feeling strained and isolated. Nearly three quarters of parents with children on the spectrum worry about their child’s financial future after they are no longer able to care for them. They fear their child will not have enough financial support after the parents die.

2. What about their Quality of Life? The day-to-day routine of families with individuals on the autism spectrum can be time-consuming and tiring. The notion of long-term independence can be frustratingly elusive. The rising cost of caring for an autistic child or grown up is demanding. Their needs are great and the complexity of the challenge is much greater than that faced by other families.

3. How can I care for them? While it’s not easy to find someone who understands the unique financial needs of families with spectrum children, resources are available. There are also school and governmental programs available as well. Unfortunately, these resources have been diminishing while the number of children being diagnosed with autism is on the rise.

4. How do I make a plan? The most important step parents can take is to begin planning early. Often the greatest hindrance to parents is not knowing where to begin. Unfortunately for these parents, that may be their greatest hurdle.

5. Who can help me? Parents need to find the right professionals and then place their trust in these advisors. While the process may seem complicated at first, the right advisor, someone intimately involved in serving families with children on the autism spectrum, can lead his or her clients with knowledge and compassion. Parents should begin by seeking out a professional knowledgeable and experienced in the development and management of Individualized Life Plans.

6. How do I find the right professional? Sometimes getting started is as simple as asking the right questions. Building the right team of advisors is a key step. At the helms should be an experienced wealth manager, a financial advisor who takes a holistic approach to truly understand their clients’ needs, family dynamics and complexities. This professional should offer a customized wealth management plan and Individualized Life Plan that reflects your family’s unique values, goals, assets, inter-family relationships along with the child’s needs.

I want families touched by autism to know there is a resource available to them to provide the professional planning, support and one-on-one advocacy they need to meet their long-term financial goals for their family and life goals for their autistic child. Parents of children with autism can gain peace of mind, and can sleep a little better at night knowing their son or daughter will be cared for over the course of their life. And that, in the end, is priceless.

Autism Financial Planning: Additional Medical Expense Deductions

Charles Massimo — Fri, 25 Nov 2011 13:15:00 GMT

Many parents don’t realize that autism is considered a medical condition. Unfortunately these parents tend to have unclaimed tax benefits. Autism financial planning will encompass a close look at any potential tax-savings benefits. It’s always best to confer with a CPA or a tax professional; however, below are some additional areas parents may overlook in regards to their child’s medical expenses.

Transportation costs to and from doctor’s appointments and therapists are considered itemized deductions. This may include bus fare, taxi receipts and mileage. The medical mileage rate is 20 cents per mile. Parents can also deduct any parking fees. Airfare for parents and the child to obtain treatment or testing can also be deducted. Remember also that trip mileage to the park, museum or other special destinations may be considered tax deductible if authorized in a note from a health care professional. If these events are important to development or a child’s sensory awareness and social skills, it can be a tax-deductible opportunity.

You can also include in medical expenses amounts paid for admission and transportation to a medical conference if the medical conference is attended by parents primarily seeking to obtain medical information concerning treatment for and care of their child. Related books and materials are also deductible. Parents and guardians need to verify attendance and have a written recommendation to attend from your child’s doctor. Some say food and accommodations expenses can also be included, while others say it can not be included. Again, consult a professional. However, lodging can be included if you are staying in a hotel while your child receives medical attention in a hospital or related setting. Then the lodging is limited to $50 per day.

Equipment and items that are important towards the therapy of a child should be tracked and itemized. As long as the item is not something a child in general would use, such as a car seat, or toys, it can be deductible. However, specially designed bedding or a specially designed car seat would be deductible. As an example, a baby stroller may not be deductible, but if a child needs a wheelchair or additional assistance with mobility or physical therapy, it can be a deduction. Diapers can also be deducted if related to a medical condition which can sometimes be the case with an autistic child. Therapeutic materials such as adaptive headphones, weighted vests or sensory swings can be deducted also. Keep a list of items you bought, how much they costs, and how they aide in your child’s development to review with your tax accountant.

Many people don’t realize that the additional costs of following a medical diet such as a gluten-free or casein-free diet can also be considered medical expenses. Despite an absence of scientific evidence, the Autism Research Institute recommends the GFCF diet as a treatment for autism and related conditions. The limitation to this deduction is that only the extra costs of the gluten-free product over what you would pay for the similar item at a grocery store is deductible. You can also claim mileage expense for the trip to the health food store and postal costs on gluten-free products ordered by mail. You should save all cash register receipts to substantiate your gluten-free or casein-free purchases. You will need to prepare a list of grocery store prices to arrive at the differences in costs. You won’t need to submit it with your return, but you should retain in for your records. Make sure to attach a letter from your doctor to your tax return. The letter should state that your child suffers from a medical condition, such as autism, and must follow a total gluten-free, casein-free diet.

New deductions for parents to consider include technology items as well. Tablets, ipads, and applications used specifically towards a child’s communication, speech or cognitive development are deductible. These items are considered similar to medical devices that may be vital to a child’s therapy.

Again, I recommend consulting a tax expert, CPA or accountant regarding these deductions. It’s also very important to save all your receipts. For parents and guardians of children on the autism spectrum, the ability to deduct every dollar is vital to already tight family budgets. Tax planning can be a critical part of an overall autism financial plan that can help parents gain a sense of control over their finances and their child’s future well-being.

Special Needs Trust: 4 Questions You Need to Consider

Charles Massimo — Mon, 21 Nov 2011 15:26:00 GMT

Estate planning can be especially challenging for families touched by autism. Enhancing an estate plan with a special needs trust is advisable. While it is essential to be guided by a qualified estate planning attorney, with a concentration serving special needs families, parents of children with autism spectrum disorders should have a basic understanding of how this trust works. Parents must ensure there will be sufficient funds in the estate to provide for the autistic child after the parents no longer can due to disability or death. Even more important is using estate planning tools that will not jeopardize the child’s government benefits such as Medicaid or Supplemental Security Income (SSI). To qualify for these benefits, individuals cannot have assets in their own name in excess of $2000, with the exclusion of a home, a vehicle and basic personal items.

Simply stated, a special needs trust is an instrument that enables an individual with ASD (autism spectrum disorders) to continue receiving government benefit programs, while also maintaining a quality of life in accordance with the parents’ wishes. When exploring the option of incorporating a special needs trust into a family plan, there are 4 choices that parents will need to face.

1. What are you looking to accomplish with this trust? There are many stipulations placed in special needs trust and how they are drafted. The trust must be established by the family and/or persons other than the individual with autism. Parents need to understand the need for a trust and in doing so should seek professional help from an advisor or estate planning attorney as mentioned above. Because the regulations are complex, make sure to select an individual who specializes in these types of trusts. Also be sure to address the purpose for the trust which may include where the individual will live, what type of treatment the child or individual should receive, what specific social activities, etc. The purpose of the trust should be conveyed to an advocate. Parents or guardians can express their wishes with a letter of intent that can ensure those making decisions for your child have the information they need.

2. What type of trust is best for your situation? There are several types of trusts that can be used to meet your specific objectives. Visit our article, “Choosing a Special Needs Trust: Which One is Right for You”, to view some available options.

3. Who will act as the trustee? The trustee manages and invests the funds for the trust and makes disbursements that are for the sole benefit of the beneficiary. The trustee can be a family member or a close friend who knows your child and who is organized, has financial knowledge but more importantly who is ethical. You can also choose a professional trustee. Irrespective, the trustee has to have an understanding of expenses that can and can’t be provided for under the special needs trust.

4. Who will act as the advocate? It is just as important to choose the correct advocate as it is the correct trustee. The advocate is someone designated by the individuals funding the trust. They are generally someone close to the beneficiary who understands the grantor’s (individuals who are funding the trust) wishes and the beneficiary’s needs. This advocate will work closely with the trustee. The grantor should complete a set of instructions that will specify how they want the beneficiary to be cared for and make sure to include the name of the advocate.

The cost of treating, educating, housing and care services for individuals on the autism spectrum is rising. The special needs trust is designed so parents can leave resources to be used for the care of their child. The most important point to remember is this: to sustain eligibility for government benefits, the trust must adhere to government rules and regulations. That is why it is particularly important that an experienced, special needs attorney draft the vehicle.

Autism Resources: 10 Concerns for Parents

Charles Massimo — Thu, 03 Nov 2011 18:29:00 GMT

As families touched by autism know, there are unique challenges, needs, and unknowns which must be addressed. It can be a very emotional and scary time when a child is first diagnosed. Not only that, life-changing events begin to occur as the child grows to adulthood. The road ahead is demanding for parents and autism resources may be scarce depending on the individual’s age and what state you are located in. Here are 10 concerns that parents face for their autistic child which should be addressed as early as possible:

1. Health- Families with autistic children experience a far greater financial burden than families whose children have other chronic health conditions. This finding, published in the December 2008 issue of pediatrics, was based on a nationally-representative survey conducted in 2005-2006 involving approximately 40,000 children with special health care needs, including those related to autism. The survey found that parents of children with autism incur greater health care costs and are more likely to experience serious financial difficulty.

2. Government Benefits- Take time to learn about programs such as Medicaid, Social security Disability Insurance (SSDI) and Supplement Security Income (SSI). These will be critical when the child reaches 18 or 21 depending on which state you live in. Congress has stepped up in some areas; however, families need to take control of their financial requirements. Disability.gov can be an excellent resource.

3. Employment- Finding a job can be a major step towards independence for adults who have autism or special needs. Parents should seek out resources that will help their children assess their skills, identify employment goals, and find training and educational opportunities. Only about 20 percent of 16 year olds with an autism spectrum disorder have looked for employment.

4. Social Life- A plan should also be in place regarding recreational and social activity as well. Pal-o-Mine Equestrian has been a great therapeutic resource and tool for my sons.

5. Quality of Life- It’s every parent’s desire for their child to live a healthy, happy life. Regardless of their social status, level of education, religion or ethnicity, parental concerns over the welfare of their child are the same and are all-consuming. Parental concerns over learning difficulty, being bullied, stress-coping, and achievement were overwhelming more with autism spectrum disorders as opposed to other special need health issues.

6. Education- There may be special schooling requirements or tutoring by someone especially trained to meet the child’s needs. This may be in addition to regular education. Aides may be required for a child to benefit from regular or special education. Special instruction, training or therapy may be required also.

7. Financial Well-Being- The rising cost of caring for an autistic individual can be staggering. The Autism Society of America estimates that the costs of treating, educating, housing and providing other services for autistic individuals will reached $90 billion in 2010. This is primarily for adults on the autism spectrum. Based on the Center for Disease Control’s statistical trends, by 2016 these costs could approach $400 billion.

8. Guardianship- What will happen when the child gets older or if something happens to you, the parent? A guardian will make decisions for the child. It’s critical to choose the right type of guardianship such as “Will it be guardianship of the person or guardianship of the property?” What’s even more important is choosing the right guardian. Remember, this will be the decision for your loved one if you are not around! Only 40%, of parents with children or adults with autism spectrum disorders have a designated guardian for the child or even created a will.

9. Independent Living- Various options are available in this area. Some choices that are available can be adult foster care in a home with a family, independent living, group home living with a staff, support home living with the help of an aid.

10. Independence- 78% of parents don’t have an individualized life plan in place for their child. They worry whether that child will be able to care for themselves financially. Parents must become informed and proactive, taking the necessary steps to develop a plan-of-action designed to address their financial challenges both today and into the future.

In closing:

Health
Government Benefit
Employment
Social Life
Quality of Life
Education
Financial well-being
Guardianship
Independent Living
Independence

are concerns parents of autistic children face everyday. There are autism resources available, but with the growing number of children being diagnosed with this disorder, and the tightening of government budgets developing an individualized life plan will give parents much deserved peace of mind and will afford important protections for the autistic child or adult as well as other family members.

Parents of Autistic Children: Other Tax Considerations

Charles Massimo — Fri, 28 Oct 2011 17:54:00 GMT

Even as we continue to gain a greater understanding of Autism Spectrum Disorders (ASD) and its daily presence in the lives of millions of families, there’s little information on how ASD is affecting them. It’s a knowledge gap that inhibits government, non-profits and the private sector from optimizing their services and assistance to families struggling with ASD. I recently wrote about some tax saving tips parents with autistic children can review so that they can take full advantage of potential savings. There are other factors parents should consider as well.

Parents may be able to claim your child as a dependent regardless of their age if they are considered to be permanently and totally disabled. Permanently and totally disables means that he or she cannot engage in any substantial gainful activity because of a physical or mental condition. A doctor determines the condition has lasted or can be expected to last continuously.

As mentioned previously, you may qualify for an Earned Income Tax Credit if your qualifying child is permanently or totally disabled regardless of age, as long as you meet the other requirements. You can receive more information here. Be advised that you may also qualify for the child or dependent care credit if you pay someone to come to your home and care for the autistic child or adult regardless of their age, if they are unable to care for themselves. More information is available.

As a volunteer, parents donating their time to local non-profit organizations such as the National Autism Association or Autism Speaks or Family Resource Centers may deduct transportation costs related to these activities. Trip mileage to the park, museum or other special destinations may be considered tax deductions if authorized in a note from a health care professional. If these destinations are important to a child’s sensory awareness or social skills, it may not only be a day of fun, but a tax-deductible opportunity.

It’s important for parents with autistic children to benefit from any and all tax deductions since the cost of caring for a child on the autism spectrum can reach $3million over the course of a lifetime. Finances can become one of the family's greatest sources of stress and only intensify as the child ages and approaches adulthood. Tax implications play a vital role in developing a fully-integrated life plan for the individual and the entire family. First and foremost though, remember to always consult a professional especially when it comes to tax issues.

Financial Planning for Autism: Autism Costs

Charles Massimo — Tue, 04 Oct 2011 18:05:00 GMT

People don’t understand the true costs of dealing with an autistic child. Financial planning for autism takes an understanding of the costs involved which typically fall into two categories; medical and educational. Parents can become overwhelmed as they deal with a raft of financial and planning difficulties.

Medical costs can include any doctor’s bills or medical issues that go along with that particular disorder, in this instance, autism. A kind of behavioral therapy directed at young children called applied-behavior analysis involves up to 40 hours per week of one-on-one work with a trained therapist. Costs for doctor’s visits, prescriptions and occupational and speech therapy also add up. Special education, camps and child care can also be exorbitant. “Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from Harvard School of Public Health”. Even with the 1990 Individuals With Disabilities Education Act that requires all school districts to provide “free and appropriate” education for children with disabilities, including autism, school districts’ resources are often limited. Unfortunately, what the parents deem as appropriate education often doesn’t match with what the school is willing to provide. One major deficiency is that “many of the treatments for autism straddle a line between medical and educational, giving room for insurance companies and school systems to each claim that it’s not their responsibility –and leave parents footing the bill, or going without treatment.”.

A recent article, “Autism Diagnoses Bring Slew of Costs for Families”, refers to a 2006 study by health economist Michael Ganz, which states that the direct costs to raise a child with autism to age 22 is more than $500,000 and that’s based on 2003 dollars. His study measured autism’s cost to society overall. A more recent study byHarvardUniversity showed that the lifetime costs of treating and caring for a person with autism is nearly $3million.

Another article, “Dealing With the Financial Burden of Autism”, mentions the shortcomings of many health insurance polices that do not cover autism, while those that do often have severe limits. And there is very little government or private financial assistance available. Even with coverage, many parents find themselves having to pay substantially out of pocket to get the behavioral therapies that are so often needed on a weekly basis. Recently the insurance situation is improving. Autism Speaks, an advocacy group, has pushed to get states to pass laws mandating that insurance companies cover autism. Today 25 states have such a law in place.

Resources for parents can vary from state to state and even within a state as does the costs of caring for a child with autism or special needs. More importantly, availability of resources seems to decrease as the child gets older. Parents will need to have a plan of action in place to care for future needs. They should develop a life plan early on that will assure the adult child’s needs are met and understood by future caregivers. Autism financial planning starts with a life plan that will spell out, in detail, the personal needs and preferences of the individual with autism.

Parents of Autistic Children: Top 3 Tax-Saving Tips

Charles Massimo — Fri, 30 Sep 2011 15:25:00 GMT

With year-end fast approaching tax season will be here before you know it. For parents of autistic children, the ability to deduct every dollar possible is crucial to their bottom line. These parents incur a lot of expenses for schools, therapies, medications, learning materials, and a lot of other services their child requires. A comprehensive autism financial plan should also incorporate any possible tax saving advantages that are available. Many parents don’t realize that autism is considered a medical condition and certain costs may be deducted. Parents should get into the habit of tracking any expense that could be related to their child’s development or therapy. Here are 3 areas parents with autistic children should review so that they are taking the necessary tax deductions available to them.

1. Medical expenses: This can include hospital visits, check ups, medication or medical devices necessary for your child to function, etc. Many people do not realize the additional costs of following a medical diet. They may also be tax-deductible. You can also write off mileage used to drive your child to and from doctor visits and even therapeutic programs such as horseback riding or yoga. Seminars or conferences attended to learn more about your child’s condition may also qualify as a tax deduction.

2. Private schools and programs: If your child has an official diagnosis, special schooling including tuition or tutoring by someone, or if they attend a school and/or program that accommodates their disability and supplies a curriculum that aids in the academic and social development of your autistic child, you may be able to write the tuition and fees off. The purpose and primary reason for the choice of school must be to alleviate or improve the disability.

3. Credits: They can be even better than deductions because credits reduce the amount of tax you owe dollar for dollar. The child and dependent care credit covers work related expenses for dependents of taxpayers. Dependents muse be under the age of 13. However, if the child requires supervision due to a disability, the age limit no longer applies. Covered expenses of up to $3,000 per year per dependent are allowed, with a max for all dependents of $6,000. The amount does not need to be equal among children. At least $1 must be for the other child to claim more than $3,000. Parents may also be able to claim the earned income tax credit.

In summary:

Medical expenses
Private schools and programs
Credits

should be monitored very closely and parents of autistic children should make sure to collect and save documentation to support the above deductions. Parents should also consult a professional, a tax attorney or CPA, about the extent to which these deductions can be used. Studies show that on average, 15-30% of families with a special needs child have one or more unclaimed tax benefits. The right financial advisor can help you develop a comprehensive plan that will ensure you take full advantage of all benefits available to you and can also put you in touch with appropriate attorneys or accountants as needed.

Managing the Assets in a Special Needs Trust: Dimensional Fund Advisors

Charles Massimo — Thu, 25 Aug 2011 18:09:00 GMT

Dimensional is one of the largest independently owned institutional investment management firms in the world. When establishing a special needs trust for a child or loved one who is on the autism spectrum, it is important to pay attention to how the assets in the trust will be managed.

Dimensional Fund Advisors was rated the #1 mutual fund family by Barron’s and Lipper this year and they have stringent principles and beliefs that set them apart from the rest. Here are several reasons you should be choosing Dimensional Funds to manage the assets in your special needs trust.

1. They have a clearly defined approach. Their investment approach is rational, structured and simple to monitor. Their goal is to keep everything transparent.

2. Distinct Investment Strategies. Dimensional does not actively pick stocks or passively track commercial indexes but instead structures portfolios based on risk and returns as identified through financial science. Their main objective is to help clients structure globally diversified portfolios and to increase returns through state-of-the-art portfolio design and trading.

3. Scientific Research as Basis for their Investment Philosophy. Research by Professors Eugene Fama and Kenneth French identified equity market exposure, capitalization, and price relative to fundamentals as the 3 factors that primarily determine the returns of a broadly diversified portfolio. Their work has held up through rigorous open review and Dimensional strategies focus on their insight.

4. Combination of Theory and Practice. By acting as a conduit between financial economists and practicing investors, Dimensional has pioneered many strategies and consulting technologies now taken for granted in the industry. This makes for an exchange of ideas that allows Dimensional to position themselves at the forefront of innovative solutions.

5. Focus on Investing with Virtually no Style Drift. Dimensional believes that, over time, a well-structured investment approach will add value with a higher reliability and confidence level that one based on instinct and prediction. They adhere strictly to their asset class definitions. Portfolio managers are allowed to buy only those stocks that meet the defined requirements, and they have no financial incentive to deviate from this practice.

6. Low Costs. Their investment management fees are positioned well below those of traditional active managers. Their buy-hold approach and trading strategies are designed to minimize costs. Careful trading can reduce or even reverse the costs borne by traditional managers. Because Dimensional focuses on capturing the systematic performance of broad market dimensions rather than the random fluctuations of individual securities, they can keep costs low.

7. Broad Line of Complementary Strategies to Meet Your Ever-Changing Needs. Dimensional funds will allow you to gain exposure to asset classes around the world. Their goal is to provide investors with global investment solutions. They are also one of the largest providers of tax-managed mutual funds in the US. On top of that they have a unique approach to fixed income. Their approach seeks to maximize returns by using the information in the current yield curve to find the optimal maturity range instead of using interest rate forecasts or simple fixed maturity index schemes.

In conclusion,

A clearly defined approach
Distinct Investment Strategies
Scientific Research
Combining Theory and Practice
Focusing on Investing
Low Costs
Complementary Strategies

is what separates Dimensional Fund Advisors from the rest of the pack. Remember, the decision to create a special needs trust can provide piece of mind regarding the future of any special needs individual. Dimensional Funds can be an excellent resource for a special needs trust, especially for parents with autistic children who are building a long-term plan and want to ensure their child will be cared for as an adult or in the event of a parent or guardian’s untimely death.

Parents of Autistic Children: 2 Options, You Pick!

Charles Massimo — Fri, 29 Jul 2011 19:58:00 GMT

Every year the number of children born with autism is drastically growing. This spectrum disorder affects about 1 in every 100 children. However, what many fail to realize are the varying degrees to which a child can be affected by autism and more importantly, the funding that is available to that child. Sadly, parents of autistic children are often left to fend for themselves.

For example, “high functioning” autistic children have normal I.Q. levels and are verbal, but are consumed with social awkwardness. Most often it is these high functioning children who don’t receive the attention and entitlements they deserve.

An article, “Autism Growing as Programs Are Cut”, addresses the fact that many children on the autism spectrum do not qualify for funds through the New York State Office for People with Development Disabilities. Just this year the New York City Council set aside $1.5 million to support 25 programs scattered throughout all five boroughs. Unfortunately the mayor tends to “forget” to put these funds in his budget so every year the council fights to receive funds.

The $1.25 million is a significant loss from previous years and it’s forecasted to only decline. Parents will need to decide what they are going to do when it comes to dealing with the costs associated with caring for an individual on the autism spectrum.

That leaves parents with 2 options. The first involves lots of uncertainty, stress, headaches and the results could be devastating. The second option involves some effort but can ease worries, alleviate the stress and give you piece of mind.

1. No plan. Most families that are touched by autism rely on government programs for assistance. With the decrease in funding for autism programs, “parents would be forced to pay for programs out of their own pockets, which many families can’t afford. Often times, parents with autistic children can not go to work because their child can not be left without supervision. The cycle continues since without employment, parents can not afford any type of treatment for their autistic child.

2. Develop a plan early on. Another article, “Autistic Children May Need Lifelong Financial Plan”, stresses the importance of having a plan early on. A person with autism may pay almost double the $317,000 a typical American spends on medical costs over a lifetime. More importantly, probate court battles could last for years and leave scars for their children and surviving relatives.

Parents often put off this kind of planning because it involves death and disability and can be very overwhelming. However, According to attorney Brian Wyatt, the earlier you get started, the better off you’ll be because it’s more time that you’ll have to achieve your goals”.

The type of professionals you should be looking for will be designated guardians, financial planners, special-needs planners or an estate planning attorney. You should network with other parents who have children on the autism spectrum. You can also contact the local bar association for attorney recommendations.

One of the most critical decisions you will make is naming a guardian. According to Elizabeth Ikemire, an expert in special needs trusts, parents will want a guardian for their child and a guardian for the estate. Naming a guardian for minor children will eliminate the risk of a judge deciding who would care for your children. Guardianship ends at 18. Depending on the severity of the child’s autism, the parent may need to name a conservator to help with caretaking and health-care decisions.

The estate’s guardian, or trustee, will care for the beneficiary’s financial matters, so look for people you can trust. The same person can be named guardian of the person and estate. Parents should not assume that a family member will be a caregiver after they’re gone. If your child needs care into adulthood, that may not be realistic.

As a parent of an autistic child, if you invest time and effort in creating an individualized life plan for your child, you will find that it has lasting value.

Autism Financial Planning: Developing a Life Planning Strategy

Charles Massimo — Fri, 15 Jul 2011 17:02:00 GMT

Having children can be exciting, frightening and costly for parents. Having an autistic child can prove to be even more challenging both emotionally and financially. Parents spend thousands of dollars not only in the hopes if finding a cure but even more so on doctors and programs that will help their child cope with this disorder. Developing a life planning strategy for your child on the autism spectrum can help to alleviate some of the financial stress as well as fears regarding your child’s future.

A recent article, “The High Cost of Autism: One Parent’s Tale”, focuses on the excessive cost involved with raising a child with an autism spectrum disorder and some of the obstacles faced by these parents. The costs associated with autism continue to grow. “The lifetime health care costs for a person with autism have been estimated to be more than $1.6 million, and the estimated total expense burden to the health care system associated with ASD [Autism Spectrum Disorders] rose 142% from 2000 to 2004”, according to a 2009 study published in the journal Pediatrics and this number is growing.

Over the past several years, my wife and I have worked tirelessly to find the best doctors, therapists, schools and other resources that would provide our two boys, who are on the autism spectrum, with the best possible care. Throughout this process, we have invested considerable effort and time, and incurred significant expenses. I soon realized that we needed to plan properly for these expenses and for our sons’ changing needs over each life stage; as well as our daughter’s needs, who does not have autism.

A life plan with help address the full range of an autistic child’s needs. From diagnosis to age 5, the primary need is an accurate assessment as well as early intervention services and in home therapy. These costs are usually covered by the government programs. At age 5 to around 8, a decision has to be made regarding school and whether the child will attend private or public.

These costs may or may not be covered. As the child approaches primary school, an individual education plan should be developed as well as a liaison with the school district to ensure the proper special education program is being utilized. When the child transitions to secondary school, new challenges will have to be dealt with as the child enters puberty and a new school.

Lastly, as young adulthood is approached, the advanced schooling, adulthood and independence stage is reached. Here parents need to plan for higher education, vocational needs, and housing and life skills for independent living.

Some families take out second mortgages to pay for costly therapies and diets they feel may help their children. Most children on the autism spectrum need assistance beyond what they already receive from their school district or government programs. In the article, “The High Cost of Autism: One Parent’s Tale”, the parents reference a weekly series of private occupational therapy sessions that work incredibly well for their son but aren’t covered by their health insurance and costs $160 per hour.

Worse yet, because there has been such an increase in autism diagnoses over the past few years, demand for doctors has increased, yet not enough doctors are available. The wait time to see a specialist can take up to 3 years.

For families that do not devise a life plan for their autistic child, all too often the alternative is to place the child in a home. When parents have access to a full range of service that support their child through every life stage, they can take comfort in knowing that they will continually be able to provide the right resources at each stage of their autistic child’s life.

Choosing a Special Needs Trust: Which One is Right For You?

Charles Massimo — Fri, 08 Jul 2011 18:10:00 GMT

Supplemental Needs Trusts, also called Special Needs Trusts or “SNT”, come in many forms for varied purposes. SNTs are highly favored under the law but have very particular rules. These trusts enable a person with a disability to maintain eligibility for government benefits They are an excellent resource for parents with autistic children who are building a long-term plan and want to ensure their child will be cared for as an adult or in the event of a parent or guardian’s untimely death.

The purpose of the SNT is to enhance the quality of life for a disabled person. However, it is important to know which trust is right for you and your family as well as the consequences of each.

A Self-Settled Supplemental Needs Trusts must be established by a parent, grandparent, legal guardian or the court on behalf of a person with special needs under the age of 65. The trust is funded with the assets of the special needs person, such as lawsuit proceeds, retroactive government benefits or an inheritance. The trust must be a payback trust and therefore any funds remaining in the trust upon the death of the beneficiary must be paid back to the government as reimbursement for the cost of care. A disabled adult may self-petition the court to establish this type of trust if there is no living parent or grandparent and if a legal guardian is not otherwise necessary.
Third Party Supplemental Needs Trust can be in the form of a living trust or a testamentary trust. All distributions from the trust are made in the sole discretion of the trustee and are usually paid directly to third parties that provide goods and services to the beneficiary. The trustee may also have discretion to make payments directly to the beneficiary if appropriate.
A living trust is established by a relative or other loved one with their funds for the benefit of a person with special needs. The trust is funded at the time it is established and the money is immediately available to the special needs individual, subject to rules regarding spending, expenses or costs. This trust is not a payback trust and therefore all trust assets remaining when the special needs beneficiary passes away and can be left to other beneficiaries.
A Testamentary Trust is established under a Will. The trust will not exist until the relative (or other loved one) passes away and their Will is admitted to probate. This type of trust is funded through the loved one’s estate and no assets pass directly to the person with special needs. It is not a payback trust and remaining assets can be passed on to other beneficiaries.
A pooled trust is a type of SNT that is maintained by a non-profit organization which pools the funds of a number of individuals for investment and management purposes. A pooled trust can be funded by a parent, grandparent, legal guardian or the special needs beneficiary himself. The trust must be funded before the beneficiary reaches age 65 in order to avoid Medicaid penalty periods. While a self-settled trust must be a payback trust, the sponsor can elect to leave any remaining funds with the charitable organization instead of paying back the government.

When setting up a trust it is best to seek the advice of an attorney as well as an advisor. A special needs trust should be established as part of a comprehensive financial plan for the entire family. It can be an excellent resource for parents of autistic children and an essential tool that can help alleviate some of the stress involved in establishing a long-term strategy.

Autism: Government Funding, Shortfalls & Solutions

Charles Massimo — Thu, 30 Jun 2011 18:37:00 GMT

In recent years it is evident that more children are being diagnosed with ASD, autism spectrum disorder. There once was a time when autism was disregarded, but now as more cases are brought to the surface autism has become a global epidemic. A recent article, “Autism and the Importance of Knowing the Funding Options”, focuses on increased funding and research for autism disorders. Some of the insights shared in this article:

State funding, federal funding and the increase in foundations have provided additional resources for parents.
The largest of these funding increases come from state levels as school districts are beginning to notice an increased population of children diagnosed with ASD.
One in every 91 students is found to have an autism spectrum disorder.
Some schools receiving funds are hiring specialists and teachers whose primary duty is to focus on the needs of these autistic children.
State schools have received a large amount of their funding from tax dollars and because of the success of these programs, this funding should continue.
The U.S. Department of Education has also taken a proactive role in funding at the educational level.
Starting at the age of two, children with autism can participate in early intervention programs.

Scientific research money is primarily funded from donations and government grants on the federal level. Fund raising also helps in providing money in the hopes of gaining a better understanding of autism. Foundations have also been set up in various communities and parents should explore what is available in their area.

Even though government funding has increased in recent years, on both the state and federal level, the amount is not nearly enough even with the inclusion of private donations and foundations. While some programs are growing, others are being cut. Parents should realize they need to focus on developing a lifetime solution. Families cannot rely on funds that they believe are out there. Make no mistake; you should take advantage of every available resource or service provided.

The best solution is to develop a comprehensive strategy that incorporates help from outside sources and a well developed family plan. The earlier you start planning the better your outcome will be. This way you are not relying solely on government services and you can be prepared for any shortcomings.

Autism Resources: Make it a Better Summer

Charles Massimo — Fri, 24 Jun 2011 20:19:00 GMT

As the school year comes to an end and summer begins many parents of children on the autism spectrum are looking for ways to continue to provide a learning environment where their child can continue to develop. Some are concerned that their child will not receive the same attention and resources over the summer which can lead to deterioration in progress. Although there are many programs offered during the break some of these programs can be extremely costly. Families find themselves sometimes unable to come up with the out of pocket money needed to provide their child with the best programs for the summer.

One solution parents have found comes from Maximum Potential. The recent launch of their summer programs gives parents the opportunity to learn the skills they need to actively help their child over the summer break. Founded in 2007, Maximum Potential provides ABA training for parents, schools and therapists.

The company has created courses, products and individual support strategies to be used in the home and school. The company's courses are being used by families and professionals around the world as well as by school districts in 30 states.

The program is a complete training packet that includes curriculums and more. Not only will this program be beneficial to parents but it also allows others to learn. Programs can be implemented that can help a babysitter or caregiver develop the skills required to meet the needs of an autistic child. Parents can now have more confidence that their child keeps their momentum from the school year going throughout the summer.

Maximum Potential’s program is currently offering 20% discounts throughout the summer. Visit http://www.maximumpotentialkids.com and use the coupon code parent3, parent6 or parent12 depending on the program you choose.

Financial Planning For Autism: Starting Before They're Young Adults

Charles Massimo — Fri, 17 Jun 2011 17:38:00 GMT

Having an autistic son or daughter can weigh heavily emotionally and financially on a family. Parents of autistic children wonder, where can I find the best autism financial planning resources? Where are the best special needs schools? How can I plan to ensure the best life for my child?

When children are young there seems to be many opportunities available that answer these innumerable questions, but what happens when your child becomes an adult? What happens when they are past the age where they fall into such programs and are eligible for autism resources? These questions then become much more problematic to answer.

In a recent article, “Future Uncertain for Young Autistic Adults” these questions become concerns as the parents of an autistic 21 year old search for a new special needs resource program for their daughter once she turns 22. Fortunately they found a program located close to where they live, but few families are as lucky. "A large number of children like Breanne were born with autism in the late 1980s and 1990s.

Programs were developed to accommodate that first generation of autistic children, but now many of them, an estimated 500,000 nationwide, are aging out of school and into adulthood, where far fewer services are available to people with autism. Breanne’s mother, Karin Sheridan, had seen this moment coming for a long time.” While most young adults who are not autistic are living self-sufficiently or off at school, these individuals face much tougher challenges and are left home with their parents.

Shortages of programs have left many autistic young adults with nowhere to go and a family left accountable not only financially but academically as well. Waiting lists for future academic programs are now taking up to 2 years so it has become more important than ever for families, especially parents, to take a more proactive role in planning for the future of their children on the autism spectrum.

These young autistic individuals are turning into adults and even though there are more resources now than ever, the needs of parents with children on the autism spectrum continue to prevail over the available means.

The earlier parents begin to layout a structured plan for the development of their child, the more likely they will make certain that they are financially prepared to care for that child throughout their life.

Family Wealth Management: Protecting Your Loved Ones

Charles Massimo — Tue, 07 Jun 2011 01:58:00 GMT

It’s always important to have a plan in place that will shelter your family. A family wealth management plan can ensure peace of mind, but becomes even more crucial when a family member has special needs. A recent article in the Wall Street Journal titled, “Pressing Employers for Autism Coverage”, made the point to mention that “a growing number of families are grappling with the worry and expense of finding treatment and special education for children with the complex disorder”.

Drawing on my over 20 years experience as a wealth manager and investment consultant, and as a father with autistic children, I am providing a fully-integrated, one-on-one service for families with autistic children. Our service encompasses a Wealth Management Plan for the whole family and an Individualized Life Plan® for the family member(s) with autism.

At Legacy of Love, we develop Individualized Life Plans® (ILPs) for the autistic member of your family. It serves in a similar way as an Individualized Education Plan (IEP) does in guiding a child’s education. However, the ILP is much more comprehensive. It is developed following a thorough, multi-disciplinary assessment conducted by an experienced team of autism professionals.

The ILP is designed to provide structure and resources to address the full range of the autistic child’s needs. From medical and clinical needs, to education, socialization, recreation, vocation, housing and independent living skills, the ILP guides the child’s life through every stage.

Through the Legacy of Love family wealth management process, we address areas such as:

Wealth development
Wealth transfer
Wealth protection
Charitable giving
Tax minimization strategies

Family Wealth Management Solutions for Families Faced with Autism

Charles Massimo — Wed, 20 Apr 2011 00:54:00 GMT

April is National Autism month and an increasing number of families are finding themselves having to deal with the financial struggles associated with having a family member on the autism spectrum. I’m pleased to have used my personal and financial experience to help other families touched by autism achieve peace of mind through caring, comprehensive wealth management & life planning services. This is done through my Legacy of Love organization.

Dr. Mark Goulston in his article for the Huffington Post states,” As a practicing psychiatrist, I have been seeing an increasing number of families with children who have an autism spectrum disorder, including the rising number of those with Asperger's syndrome. What has struck me is not just the psychological toll that this can take on a family, but also the financial toll for caring for these children who will require help their entire lives… If you have concerns regarding the financial repercussions of raising and caring for a child with autism spectrum disorder, I'd suggest you check what Legacy of Love has to offer.” I was delighted that Dr Goulston mentioned Legacy of Love in his article as recognition of my commitment to helping families touched by autism develop a plan that can help to alleviate some of the financial stress.

Legacy of Love was also recognized as a resource for families in Parade Magazine as well. “Just because an autistic child ages out of the school system when he or she turns 21 that doesn’t—and shouldn’t—mean that his or her education and development are over. As families with autistic children transitioning to adulthood often suggest, it’s never too early to search for meaningful programs and realistic funding options.” As a father of two boys on the autism spectrum I know first-hand the many challenges a family impacted by autism faces. If you or someone you know is touched by autism and would like to better understand the benefit of creating an Individualized Life Plan (ILP), please contact me at info@legacyofloveplan.com.