By Sheryl R. Frishman, Esq.

As summer approaches, our children get excited for the end of school year and summer vacation. Summer is usually a time when adults can ease schedules and relax. If you are a parent of a school aged child with special needs, the arrival of summer is exciting, but it also comes with a sense of dread, significant stress and anxiety. Summer means a change in routine, excruciating amounts of down time, travel, visiting family and friends, outdoor outings, barbecues, too much noise, and too much food.

As a mother of a child with significant special needs, I have developed some coping mechanisms and methods to use summer as a learning opportunity for my child. I hope these are helpful to you!

Set and Stick to a Schedule and Keep Routines in Place
A break in routine can often lead to an escalation of behaviors or regression for some children. Even if your child receives Extended School Year (“ESY”) services from your school district, this program can often be different than the regular school year program and is often only six weeks in length.  During down time it is critical to stick to a schedule. Taking a few minutes to plan out the day or a week can be the secret to a successful summer vacation. Whenever possible, maintain as much of the usual structures. For example:

• Keep consistent bedtimes and wake up times even when there is no school and also try to keep similar limits set during school
• Keep “screen time” allowances limited
• Maintain reading routines
• Meals should remain around the same time

Keep up the Learning
Learning does not have to stop just because school is out for the summer.  The summer is a great opportunity to incorporate authentic learning experiences. Additionally, it is important to build time into your child’s daily or weekly schedule to research experiment and investigate a topic that interests your child. Choose activities that play to your child’s strengths not just their preferences. You can go to homeschooling websites to find various resources.

Set up Play Groups and/or Social Skill Groups
The summer can be a great time to get involved with other families with special needs children.  Create your own play or social skills group and plan dates for activities or field trips. It is important that your child has opportunities to continue to develop their social skills and not lose touch with their classmates.This can also be a good networking opportunity for parents.

Get Activities from School Personnel
Before the school year ends, ask teachers and therapists for activities that you can do with your child over the summer. This can help you establish a routine and can also help you understand, first hand, what your child has been working on and whether they can generalize skills.

Try to Schedule Ample Help
If possible, try to schedule extra help to assist you during the summer time. You can seek out special education teacher aides that work for a school district and have the summer off. They may have some time and you can enlist them for help.This help can also take the form of a “mother’s helper;” someone to come along with you to activities and gatherings. You may be able to find mother’s helpers through a local high school or college. One thing that I want to emphasize: it is OK to leave your child with special needs behind (with proper supervision) if you are attending an event that you feel will be difficult for your child. Many parents feel very guilty about leaving their child behind but it is usually preferable than putting him or her in a situation that would be overwhelming or difficult.

Keep Expectations Reasonable
We tend to have high expectations for summer vacations and want them to be “perfect” family times. Try not to get frustrated if the occasions do not go as planned. Instead of setting many goals for your special education child, set one goal or family project that you can all work on together.

It is a Good Time to See How Your Child is Truly Performing
We recently had or are about to have our annual CSE meetings. At this meeting, the teachers and therapists spoke about your child’s progress (or lack thereof) in certain areas. The summer is a good time for you to make an assessment of your child’s progress and see if you agree or disagree with the CSE. Take the time over the summer to really get to know how your child is doing and review his IEP for the upcoming year. You may find that the goals are not relevant or are set too high or low. You may want to call a program review at the beginning of the school year to address your concerns.

Use Time with Family to Discuss Plans for the Future
While visiting with family and friends over the summer, it is a wonderful time to discuss your plans for the future of your child with special needs. It is a good time for your extended family members to see, first hand, what it takes to raise your child and for you to see how these family members deal with your child. Use these family gatherings to discuss guardianship and other special needs planning ideas you may have.

Count Your Blessings
While it is hard to raise a child with special needs and you may wish you could just have a “normal” summer and not worry about all of the above, summer is an important time to try to stop for a moment and count your blessings and try to realize all of the gifts your special needs child has given you. Even though summer is a difficult time in my own home, I realize that I have become a better mother, a more patient person and a better attorney helping families with special needs, all because of my son. This makes me feel very lucky indeed!

Have a wonderful summer!

For more information, visit www.specialneedsnewyork.com.

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The New York State Education Department is pushing for legislation that would make significant changes in the state’s special education laws. The bill, A-7060 in the Assembly and S-5557 in the Senate, has been referred to the education committee.

• Private School Students: The proposed legislation would make changes in the law that requires school districts to provide services to special needs students who attend nonpublic schools. The deadline to request such services would be moved from June 1 to April 1 for students who already have an Individualized Education Program. An Extended School Year would be available for these students, but they would not be entitled to a special class or Integrated Co-Teaching.

The bill would also make changes to membership in the Committees on Special Education. The position of school physician would be eliminated, and there would be a parent member only on request of the parent. Subcommittees would also be eliminated. Note that NYS regulations have already

• Pre-School Evaluations: In regard to preschool, parents would no longer have the right to choose the evaluator for Preschool Special Education Evaluations. All school districts would be considered approved evaluators.

• Statute of Limitations: The statute of limitations for special education due process hearings would be reduced from two years to one year, except in regard to reimbursement for private school tuition, in which case the statute of limitations would be six months from the student’s placement in the private school.

• Transportation: Finally, CSE Composition confirmed students receiving transportation services up to a distance of 50 miles to and from a nonpublic school, to receive services similar to those available in the district of residence, would not be entitled to special education services from the district of location.

This proposed legislation will have a significant impact on the services to students with disabilities.

For more information, visit www.specialneedsnewyork.com

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Individuals with autism spectrum disorders may be prone to wandering or elopement, which can raise a significant health and safety risk. It is important for family members and caregivers to be aware of the risks and prevention strategies.

Wandering may include moving about with no apparent fixed plan in mind, or moving toward a location such as a landmark or place of obsession. Individuals with autism may also respond to loud noises or excitement by wandering or quickly fleeing. Elopement refers to a situation where a person with autism leaves a safe setting unnoticed or unsupervised. One of the leading causes of death among people with autism is drowning, exposure and other wandering-related factors.

Wandering has a medical diagnosis code approved by the Centers for Disease Control. Caregivers for people at risk of wandering should discuss the diagnosis code with the treating physician. A medical diagnosis can be helpful in obtaining insurance coverage for safety equipment and support requests for safety equipment in a school environment.

Caregivers should also be aware of strategies to prevent and deal with wandering. The first step is to understand wandering patterns and triggers in order to be aware of the problem. The individual’s home should be as secure as possible and the individual should be made aware of the importance of safety. Caregivers should consider identification materials such as a medical ID bracelet and location devices such as a personal GPS locator. Swimming lessons should also be considered. Finally, caregivers should make sure that neighbors and first responders are aware that an individual with autism lives nearby, which may improve response if an incident occurs.

For more information about autism safety, visit www.autismsafety.org. To learn more about our legal services for people with special needs, visit www.specialneedsnewyork.com.

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Tags: wandering

Our guest blogger this week is Ken Myers, President of Morningside Nannies.

Having a child with special needs, you want to make sure he or she gets the care they require while you’re away. Not every nanny is equipped mentally and physically to deal with the kinds of stresses and requirements that are demanded of your child. You need to be able to trust that your nanny can handle any situation that may arise. When looking for a person that can fit that criterion, keep a few things in mind:

1. Experience - An ideal nanny would be one who has had experience dealing with children whose needs are similar to your own. Those who have experience in particular afflictions such as various stages of autism or ADHD can prove to be excellent nannies. While experience is definitely a bonus, it shouldn’t completely account for your decision on whether or not you should hire them to be your childcare provider.

2. Adaptability - Asking the right questions surrounding your specific needs can provide some insight to whether or not the candidate is going to be a good fit. Questions such as those that cover real-life daily routines and circumstances could provide you with a great deal of information on how well the nanny will perform. You should devise the questions to cover situations yourself has had to deal with in order to gauge the candidate’s answers against how you handled them. They might have a better solution than one you implemented.

3. Education - Special needs children require the caregiver to have a certain level of knowledge dependent on the type of care that is needed. You wouldn’t want to have a high school student with no knowledge of autism to care for your autistic child. Even if the person is pleasant with a spectacular nature to them, you still want someone who has knowledge of what to expect from your special need. A potential nanny that can produce that kind of knowledge and educational records is an ideal candidate. You shouldn’t have to train your nanny in order to care for your child.

4. Medical Training - Although you probably don’t need an actual doctor, medical training of any kind is always a great bonus. Nannies that are perfecting their skills caring for special needs children usually have more than basic CPR abilities. However, you shouldn’t allow the lack of medical training to dissuade you from a candidate who shows great potential in other areas.

5. Background Checks - It is always a good idea to perform a background check anytime you are inviting anyone to work, and possibly live, within your home. While they may have a shining resume, perfect application, and extensive knowledge of your needs, they could also be hiding the fact they are dodging an arrest warrant. Besides, the background check can reinforce the potential nanny’s information about experience and education, which can put your mind at ease that you hired the right person for the job.

Your nanny needs to be able to provide a safe and stable environment for your child. Depending on the needs of your child, this can become quite an involved task and you need to trust your caregiver to provide that environment. The last thing you need to have looming over your head is doubt that your nanny can be up to the task of caring for your child.

Ken Burns holds a master’s in business leadership from Upper Iowa University and multiple bachelor degrees from Grand View College.  As president of  morningsidenannies.com, Ken’s focus is helping Houston-based parents find the right childcare provider for their family. When he isn’t working, he enjoys spending time with his three children and his wife.

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Disabled individuals who cannot work are entitled to Social Security disability benefits, but the process of applying can be lengthy and difficult. The majority of applicants are denied benefits at the outset, and they may be uncertain of how to proceed.

When we discuss Social Security disability benefits, we are talking about two different programs. Social Security Disability Insurance (SSDI) is available to people who have paid into the Social Security system through taxes during the 10 years before they became disabled. Supplemental Security Income (SSI) is available for people who have not paid enough into the system to be eligible for SSDI. To be eligible for either type of benefits, one must be “unable to engage in any substantial gainful activity” – i.e. “work” – because of a “medically determinable” disability lasting one year or more or expected to result in death. The questions of whether or not an individual is disabled and whether or not he or she can work are the key factors in determining eligibility for benefits.

The first stage in the process is the initial interview. A disabled individual may contact the Social Security Administration (SSA) to set up an appointment. One must have been disabled for five months before applying for SSDI benefits; there is no waiting period for SSI benefits. An applicant should bring two forms of identification to the interview, and any medical records that provide evidence for the disability. If there are records the person has not obtained, he or she may sign a medical records release form permitting the SSA to obtain them. If an individual is not able to go to a Social Security office, he or she may conduct the interview by telephone or appoint another person such as a family member to represent the disabled person at the interview. The process of deciding on the application takes from three to six months.

The majority of claims are denied at the initial application stage, but this should not deter disabled individuals from continuing with the process. Often a denial is the result of insufficient records or information that has not been presented persuasively. The second stage of the process is a request for reconsideration, which also involves an interview and the submission of any additional evidence. If the request is denied, then the third stage is to file for a hearing before an administrative law judge. An attorney can assist an applicant at any stage of the process; at the hearing stage and beyond, such assistance may be invaluable.

At an administrative hearing, the disabled person may present the testimony of witnesses and any other additional evidence. The government may also hear the testimony of a vocational expert and/or a medical expert who will offer their expert opinions regarding whether the applicant is disabled and whether he or she is unable to work. If the applicant is unsuccessful at this stage, he or she may file a claim with the Appeals Counsel Review Board. If the appeal is denied, then the last option is a civil lawsuit in District Court.

At any stage at which the benefits are granted, they will be retroactive to the date of the original application. If it is determined that the disabled individual is not able to handle the cash benefit appropriately, then a representative payee will be appointed to handle the money for the disabled person’s benefit.

For more information about disability law, visit www.specialneedsnewyork.com.

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Tags: disability, social security disability benefits, ssdi, SSI

Parents of children with autism spectrum disorders often experience high levels of stress and marital problems when compared with other parents. Much of this stress is the result of the greater amount of caregiving needed when raising a child with autism. A recent study shows that being able to take a break from caregiving, even just for an hour per week, decreases stress and improves the quality of a marriage.

The study was published in the Journal of Autism and Developmental Disorders. Researchers surveyed the parents of 118 children with autism spectrum disorders and found that the number of hours of respite care per week was directly related to better marital quality. There was also an association between respite care and a reduction in stress.

About 64 percent of the children in the study spent time with a respite care provider, such as grandparents, other family members, babysitters and community agencies. The study found that for every hour per week of respite care, there was less stress and better marital quality. The researchers said that it is important for supports for respite care to be developed for families raising children with autism.

The study adds to what is already known about the importance of respite care for parents of kids with autism. A study last year found that children with autism had a reduced risk of psychiatric hospitalization when their parents were able to take advantage of respite care.

For more information about our legal services, visit www.specialneedsnewyork.com.

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Tags: asd, autism, respite care

By Marion Walsh, Esq.

Today is National Children’s Mental Health Awareness Day.   Statistics show evidence of increasing mental health issues in children.   Chances are everyone knows a child struggling with mental health issues. According to statistics from the Surgeon General, approximately one in five children in the U.S. will experience a mental, emotional, or behavioral disorder between kindergarten and graduation. Failure to address children’s mental health needs is linked to poor academic performance, behavior problems, and school violence, dropping out, substance abuse, special education referral, suicide, and criminal activity.

Despite the high frequency and children’s clear needs for help, too many myths and unspoken stigmas plague families who have children struggling with mental health issues.  Clearly, a public health approach is necessary to address disorders and promote mental health in children.    Parents and school districts must forge partnerships to address this unfolding crisis.  Indeed, along with help from medical providers, they are the only ones who can.  However, funding cuts and tax caps in school districts have made the problems harder to address.

Signs of Mental Health Problems in Children:

The Mayo Clinic and other professionals list the following signs of mental illness in children:

· Mood changes: Look for feelings of sadness or withdrawal that last at least two weeks or severe mood swings that cause problems in relationships at home or school.  Some students simply withdraw.  School avoidance or physical symptoms without physical causes can also be a sign of mental distress.

· Intense feelings: Be aware of feelings of overwhelming fear for no reason — sometimes with a racing heart or fast breathing — or worries or fears intense enough to interfere with daily activities.

· Behavior changes: Look for drastic changes in behavior or personality, as well as dangerous or out-of-control behavior. Fighting frequently or expressing a desire to hurt others also are warning signs.

· Difficulty concentrating: Look for signs of trouble focusing or sitting still, both of which might lead to poor performance in school.

· Unexplained weight loss: A sudden loss of appetite, frequent vomiting or use of laxatives might indicate an eating disorder.

· Physical harm: Sometimes a mental health condition leads to suicidal thoughts or actual attempts at self-harm or suicide.

· Substance abuse: Some children use drugs or alcohol to try to cope with their feelings.

Why the Prevalence of Mental Health Problems in Children?

On the one hand, our world and schools are much safer and enlightened than decades ago.  Most states have outlawed corporal punishment; laws require services and accommodations for children with disabilities; parents monitor teachers’ abuse and vice versa; therapists are around every corner.    Clearly we are diagnosing disorders more precisely.   However, our society is more stressed, anxious and pressured.   Many parents must work long hours and do not see problems until they become crises.  The Internet has unleashed cruelty and crudeness of a previously unimagined scope.   Single parent families add risk factors.  In general, children may receive little training in ethics at home nor at school.  The accessibility of assault rifles shocks the conscience and makes apocalyptic violence a potential threat.

Legal Basics:

Parental Responsibilities:

Obviously, parents have a legal duty to care for their children and family represents the first source of support for a child’s mental health.  However, the increased stress and fracturing of life today makes it imperative that schools partner with parents to help children.   Parents must take a proactive role in helping their school district understand their child’s needs and also finding private help.   Yet parents, while closest to their children, can be in denial of serious problems.  A social partnership is necessary.

School District Responsibilities:

As noted by the National Association of School Psychologists, schools represent excellent places to promote good mental health.   Children spend a significant amount of time in school, and educators have the opportunity to observe and address their needs. Doing so effectively requires developing the capacity both to reinforce children’s natural mental health strengths and to identify and respond to children suffering mental health disorders.

Not every child with mental health issues has a disability but if a condition affects educational performance, the student should be referred for special education and related services.    Pursuant to the Individuals with Disabilities Education Improvement Act (IDEA), 20 USC §1400, et. seq. and parallel state law, school districts have a responsibility to identify and provide appropriate services to students with disabilities, including those who have an emotional disturbance or disability. As the Supreme Court noted in Honig v. Doe in 1988, “Among the most poorly served of disabled students were emotionally disturbed children: Congressional statistics revealed that for the school year immediately preceding passage of the Act, the educational needs of 82 percent of all children with emotional disabilities went unmet. See S. Rep. No. 94-168, p. 8 (1975).”

Under the 2006 IDEA Part B regulations, 34 CFR §300.8 (c)(4)(i), “emotional disturbance ” means a condition exhibiting one or more of the following characteristics “over a long period of time and to a marked degree that adversely affects a child’s educational performance”:

(A) An inability to learn that cannot be explained by intellectual, sensory, or health factors.

(B) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.

(C) Inappropriate types of behavior or feelings under normal circumstances.

(D) A general pervasive mood of unhappiness or depression.

(E) A tendency to develop physical symptoms or fears associated with personal or school problems.

Steps School Districts Can Take:

School districts should develop a task force and work with community members to create systems and policies to proactively address student mental health needs.

1. Develop Effective Child Find and Special Education Programs with Effective Evaluations

2. Provide Effective Monitoring and Building Level Interventions

3. Train to Spot Signs of Mental Illness in Children and to Take Affirmative Steps

4. Develop Effective Anti-Bullying Programs (Bullying exemplifies and causes mental health problems).

5. Provide Parent Education and Parent Counseling and Training

6. Cultivate Partnerships with Outside Agencies

What Does Not Work

The Blame Game:

Schools often expect parents to have private mental health services to address school behavior.  Parents without resources cannot pay for private services and the community based resources have very long waiting lists.  Parents who can afford the services may not be able to address the behavior that is based in school or caused by the school environment. Often the parents get blamed for not “dealing” with the problem.  Parents also blame the school personnel for not addressing the problem.  The blame game can go in circles.  It only causes more stress to families and drains resources from schools which are facing shrinking budgets.

Review of Federal Litigation:

In the Second Circuit, which has more education law litigation than any other jurisdiction, litigation over children with emotional disturbances exceeds litigation over other types of disabilities.   Most litigation centers around whether schools provide a free appropriate public education to children under the IDEA, which is the most powerful statute available to students and families in ensuring appropriate services from school districts.   Much of IDEA litigation in the Second Circuit centers around tuition reimbursement after parents unilaterally remove their child from public school.

No matter which side is ultimately successful, case law only demonstrates failed attempts at addressing mental health issues. For example, in Gagliardo v. Arlington Central School District, 489 F.3d 105 (2d Cir. 2007).   In this case, the student exhibited symptoms of anxiety, depression and social phobia, beginning in fifth grade and lasting for the next seven years throughout high school.  The parents finally removed the student from public school and initiated litigation to seek reimbursement for tuition at a supportive private school. The Southern District found that the District denied the student a free appropriate public education and awarded tuition reimbursement. But, the Second Circuit overturned the reimbursement award and ruled that the private school did not provide individually tailored services for the student’s unique needs.   This decision came five years after the litigation began. See also Eschenasy v. New York City Department of Education, 604 F. Supp. 2d 639 (S.D.N.Y. 20008). (Court found that student who cut class, took drugs, stole and engaged in hair pulling, cut herself, had attempted suicide and was diagnosed with a mood disorder and borderline personality features had an emotional disturbance under the IDEA and that the school district had denied her a FAPE and had to pay the parents tuition reimbursement as private school was appropriate).

Conclusion

Every parent and school professional must be aware of the impending mental health crisis confronting our youth and take steps to understand and advocate.  Parents and schools must act together to protect children become educated on risk factors and symptoms of mental health issues.

Posted in New York Special Needs, Special Education Advocacy | Comments Off
Tags: national children's mental health awareness day

A guardian is one who is legally entitled to make decisions for another person, such as financial and medical decisions. Guardians are typically appointed for adults with special needs or seniors, when they are unable to care for themselves. In the state of New York, there are two separate processes: Article 17A guardianship is typically used for a developmentally disabled individual and Article 81 guardianship is typically used for a person needing assistance with personal care or financial matters, such as an older person with a progressive illness.

Article 17A Guardianship

When a child with special needs reaches the age of 18, parents will no longer have the right to make decisions for that person, unless an Article 17A guardianship proceeding has been completed. This type of guardianship grants broad authority similar to that held by parents for minor children. A good candidate for an Article 17A guardianship would be a developmentally disabled child approaching the age of 18 whose mental capability is similar to a much younger child.

This type of guardianship was created by Article 17-A of the Surrogate’s Court Procedure Act. It is granted by county Surrogate Courts. If the person needing a guardian is under the age of 18, then the court in the county where the guardian lives is used; otherwise the court in the county where the disabled person lives is used.

Obtaining this type of guardianship is relatively simple. Either two doctors or a doctor and a psychologist must certify that the disabled person needs a guardian. The guardian must also provide information about his or her prior residences. The disabled person and his or her spouse (if any), other parent (if only one parent is seeking guardianship), and any adult siblings are all served with guardianship papers, and a court hearing is held to determine whether guardianship will be granted.

Article 81 Guardianship

When an adult is no longer able to make important life decisions or tend to everyday needs, due to an accident or illness, an Article 81 guardianship may be appropriate. This type of guardianship grants specific, individualized powers to the guardian, according to the needs of the disabled person. This type of guardianship is often used in the case of an older person with Alzheimer’s disease or other dementia.

This type of guardianship was created by Article 81 of the Mental Hygiene Law. It is granted by county Supreme Courts, and is based on the concept of the least restrictive alternative, meaning that only specific types of authority are granted, tailored to the particular needs of the incapacitated person.

In deciding Article 81 guardianship, the court is required to consider alternatives that may better suit the needs of the individual, such as a nursing home, assisted living facility or visiting home health aides to meet the person’s daily needs, or a trustee or payee to handle financial matters. The court may appoint a guardian if it determines that the person cannot provide for personal needs or manage property and financial matters without a guardian and the person is incapacitated or agrees to the guardianship. In the case of a person suffering from the earlier stages of a progressive disease, a court can grant a guardian limited powers that can later be expanded through a modification order.

To learn more, visit www.elderlawnewyork.com or www.specialneedsnewyork.com.

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Tags: 17-a, article 81, guardianship, new york state

Our friends over at Friendship Circle, a non-profit organization that provides programs and support to the families of individuals with special needs, will be holding their second annual Great Bike Giveaway (April 15 – May 12) — a national contest that donates adaptive bikes to children with special needs. Winners will be drawn on May 13, 2013.

The Great Bike Giveaway is partnering with adaptive bike companies (click here to read more about these bike sponsors) from around the country to donate top of the line adaptive bikes to children and young adults who need them the most. The

How to Participate:

1. Browse through the five types of bikes available and select a bike that will best fit your child’s needs, from there you can also choose the bike drawing you would like to submit for.

2. The bike pages have a space where you can enter the contest. Submit a picture of your child with special needs along with a short explanation (250 character maximum) about why this child needs an adaptive bike.

3. Once the submission has been approved, the participant must be nominated by 50 friends and family members to be entered in the drawing. On each bike page, the name and picture of all submitted entries will be listed. From here, you  can click on the picture and nominate them or share the page amongst your own contacts to encourage more nominations or votes.

4. A drawing will be held to determine the winners. Only those with 50 nominations will be eligible. An additional five special Director’s Choice winners will be chosen by a panel of judges based solely on the content of their submission.

Additionally, non-participants can donate money towards adding more bikes to raffle off. On each bike sponsor page there will be an option to donate towards adding an additional bike to the giveaway. Every time the sum reaches the top of the meter another bike is added.

For rules and regulations about this giveaway, click here. To read more about the Great Bike Giveaway, visit their official website at: https://friendshipcircle.org/bikes/.

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Tags: friendship circle of michigan, special needs, the great bike giveaway

By: Sheryl R. Frishman, Esq., Littman Krooks LLP

As a mother of a special needs child, there is nothing more frightening for me than my son being in this world without me. The thought of this keeps me up at night. In my opinion, no one knows him as well as I do and no one can care for him like I can. Nevertheless, there will most likely be a time when he is on this earth without me. While planning for the future cannot give you complete peace of mind (as nothing can), a proper plan can be put in place, and there are fabulous tools available, to ensure that your child will be properly cared for after you are gone. Not planning will put the child you want to protect more than anything in the world in jeopardy and in a vulnerable position.

Here are 10 reasons it is necessary to plan for the future of your child with special needs:

1. You are able to do the planning now. Do not wait until it is too late to do the planning. If you are reading this article you are well enough to do the planning for your child. Mahatma Gandhi said “Learn as if you were going to live forever. Live as if you were going to die tomorrow.” We cannot be sure what tomorrow will bring. The time to plan is now!

2. Planning can change as your child ages. Many parents do not want to plan for the future because they want to wait and see exactly what their child’s functioning level will be. Also, parents often want to wait until siblings are old enough to take the reins. A plan that you put in place now can be altered at a later date if circumstances change. However, missing the opportunity to plan, because you waited, will hurt your child much more than a potential change in functioning level. Better to be safe than sorry!

3. You are able to make sure future caregivers know your wishes. Write down what it means to care for your child. What are his likes or dislikes? Where would you like him to live? Etc. Etc. Preparing a “Letter of Intent” (sample letter of intent) will give the people who will be caring for your child the intimate details of what it means to care for your special child.

4. So you can continue making decisions for your child. When your child reaches the age of majority they are emancipated regardless of their functioning level. In order to continue making decisions for your child after he or she reaches the age of majority you will need to become your child’s guardian. You will have to go to court to become your child’s legal guardian after emancipation age. This is not something that happens automatically!

5. So you can have a say in who will become your child’s future caregivers. You want to be able to determine who will care for your child when you are no longer here. If you do not make this determination, or be part of the process for determining your child’s future caregivers, or successor guardian(s), this will be done for you and without your input after your demise.

6. Your child may lose valuable public benefits. If your child has a developmental disability, many of the services he or she will receive, once aged out of the school system, will be paid for by “means tested” public benefits. Thus, your child must have assets and income at or below the poverty level to be eligible. If your child inherits directly, even a small amount of money or real or personal property, he or she would probably be knocked off of those valuable benefits. Therefore, the use of an estate planning tool like a “Supplemental Needs Trust” is necessary to protect the priceless benefits.

7. Public benefits alone will not give your child the quality of life you want them to have. As stated above, eligibility for public benefits may allow your child to qualify and/or receive services once he or she ages out of the school system. Nevertheless, these public benefits will not pay for the “extra” items that you would want your child to have. For example: a television set, a video game, travel, supplemental care givers, companions, etc. A properly drafted Supplemental Needs Trust will allow your child to remain on the priceless public benefits that they require but to also receive the “extras” you would want them to receive.

8. You can put a financial plan in place. We all hear about the importance of saving for your child who is going to college. What about saving for your special needs child? It is extremely important that we put a financial plan in place that will allow us to fund a properly drafted Supplemental Needs Trust to supplement our child’s reliance on public benefits. Life insurance and other financial planning tools need to be explored with a special needs planning professional.

9. The cost of doing the planning is much less than the cost of not doing the planning. People are always concerned about having to use an attorney and the costs involved. The possibility of your child losing their public benefits and the possibility of leaving your child’s future caregivers with no direction will be a much higher cost that your vulnerable child will have to bear after your demise if you do not plan. This planning needs to be done correctly and by a highly qualified special needs planning attorney. Please visit the Special Needs Alliance, www.specialneedsalliance.org, to find a qualified special needs planning professional. This is not something every attorney or even a general estate planning attorney can do. You need to find a professional in your state that specializes in special needs planning so you can assure your child is protected. This is not something you want to bargain hunt for! Not doing the planning correctly can end up costing so much more than using the right qualified attorney

10. If you do not do the planning you will be leaving your child that you want to protect more than anything in the world in a vulnerable position relying on others to do the planning for your child without your input after your demise!

For more information on special needs planning, visit www.specialneedsnewyork.com.

Posted in IEP, New York Special Needs, Special Education Advocacy, Special Needs Trusts | Comments Off