Supplemental Needs Trusts

Attorney Michael Carr provides information on drafting a Supplemental Needs Trust to provide for your special needs child.

Parents of children with disabilities often worry about how to provide for their children over their lifetimes. A Supplemental Needs Trust may be the answer.

A Supplemental Needs Trust holds an unlimited amount of money in trust for the benefit of a person who is disabled according to Social Security standards. It has advantages over other arrangements for care, including that its assets cannot be seized by creditors, taken in a lawsuit, or counted when determining the trustee’s eligibility for government programs.

Drafting a trust is a complicated job. It has to be done correctly to ensure the benefits listed above, and it may involve other issues such as establishing guardianship of a child over the age of 18. The work is best done by an attorney with experience in the field, such as attorney Michael Carr of the law firm Jones, Gregg, Creehan & Gerace. Contact him at 412-261-6400, or mac@jgcg.com, and he will be glad to answer your questions about Supplemental Needs Trusts.

Autism News

Autism and Vaccines Unrelated? More research:

Autism and Neural Communication

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Peekaboo and Early Autism Detection

Animals Help Children with Autism

Toxic metals linked to Autism

Five common disorders share a gene problem

Speech Emerges in Children with Autism and Severe Speech Delay

Brain connection differences in children with autism

Girls May Be Naturally Resistant To Autism

Importance of routine, structure, and consistency

These types of behaviors can be controlled in many ways: behaviorally, with medications, and some parents have reported that they have seen excellent results with biomedical treatments.

A husband and wife with Asperger’s Syndrome give invaluable advice to and for teens and adults going through this difficult period. Anyone who has read Jerry Newport’s first book, “Your Life is Not a Label”, knows that he has a knack for bringing understanding, warmth, and humor to any subject. Here, in this invaluable book, he and his wife, Mary, bring those same abilities to explaining the world of sexuality to people with autism and Asperger’s Syndrome.

Check Out The Book Here

Your Child’s IEP

Once you’re in a school system, whether it is kindergarten, 1st grade or 10th grade, with a special needs child, you’ll have to go through an Individualized Education Plan, or IEP. You’ll hear that over and over again!! IEP’s are EXTREMELY IMPORTANT because the school MUST adhere to everything agreed upon in IEP. They are legally bound by that document. If you want something for your child, make sure it is spelled out explicitly in the IEP.

The Basics

Your child, with the diagnosis of autism spectrum disorder, likely qualifies for services through your school district. Although laws vary from state to state, Federal laws protect children with disabilities and entitle them to what is commonly known as FAPE — a free and appropriate public education in what is commonly known as LRE — least restrictive environment. What does that mean? Your child is probably eligible for services that will help him or her have a successful school life whether you choose to have your child included in a regular education class, or if you choose something more restrictive.

A Common Sense Approach to Inclusion

There is much debate over the subject of inclusion. Some advocates feel that all children should be included, regardless of their disability. At AutismLink, we believe that one size does not fit all — inclusion is a great and powerful thing, but it’s not the only way. Parents likely know what is best for their child — whether its an educational placement in an autism support class, life skills classroom, or inclusion within a regular education classroom. If you feel that your child is better served in a smaller classroom with peers on the spectrum, don’t let anyone tell you you’re wrong. Inclusion is a good thing, and of course, we always encourage inclusion, but it’s not right for everyone. Only you and your IEP team can decide. The bottom line is — use your common sense and your knowledge of your own child. If you decide on a more restrictive placement, that’s your choice. Don’t let anyone tell you that you’re wrong. If you want your child to be included in a regular education classroom — fight for your rights to inclusion.

Many times, school districts will tell you that your child is better off in an autism support class, when in reality, school districts seem to like those placements because they cost a great deal less to run than having to hire a 1:1 aide for a child with a disability. If you feel that your child should be in a regular education classroom with an aide, then you should fight for it. Many districts will fight parents on this very issue because in an autism support classroom, a district has to pay one teacher and one or two aides, whereas 1:1 aides cost significantly more money. DO WHAT YOU FEEL IS BEST FOR YOUR CHILD. You have the right to ask for whatever you want from your district. The IEP team, which is comprised of parents, teachers and administrators, will meet to decide as a team what is best for your child. Always remember that YOU ARE PART OF THE IEP TEAM. If you don’t agree, your opinion carries as much weight as anyone else on the team.

I’m new to this — what’s an IEP?

An IEP, or individualized education plan, is the legal document that you will create with your IEP team. An IEP team consists of parents, teachers, school administrators and likely a school psychologist, occupational therapist and perhaps a speech therapist as well. Remember that YOU are an integral part of this team. Once the IEP is created, the school district must follow the IEP to the letter — it is a legal document. You can, however, at any time during the school year, reopen your IEP by sending a WRITTEN REQUEST to your district to reopen your child’s IEP. If you do not agree with the IEP at the end of the process, DO NOT SIGN ANYTHING.

The U.S. Department of Education has a wonderful guide on the IEP process which can be downloaded in either MS Word or in a PDF Format

The First Step

The first step in the process is that you need to request an evaluation of your child. If your child is just going into the public school system by transitioning to Kindergarten, you will likely receive notice from your district because your child is already in the system. However, if your child was not diagnosed with autism spectrum disorder until they were already in the public school system, you will need to WRITE A DATED LETTER requesting that your school provide your child with a psychological evaluation. Although every state has different laws, each state is governed by timelines. This means that the clock starts ticking the moment that the school district receives your request for an evaluation. Most states have laws that say the psychological evaluation must be completed within 60 calendar days from the date of request. You should check with your state’s Department of Education to be sure, however.

Legal timelines apply to the entire IEP process. Once your child receives a psychological evaluation from the school district, you should receive the “ER” or “evaluation report” within a short period of time after the evaluation occurs. Again, check with your state’s particular laws for the legal timelines involved in the IEP process.

The Next Step

The evaluation report will give a recommendation as to whether the school psychologist believes your child is eligible for special education services from your district. Hopefully, that answer will be yes. If not, you have the right to an outside evaluation from an independent licensed school psychologist, and you can ask that the school district pay the fee for this evaluation. If the district and the parents still disagree on the child’s eligibility status, a hearing can be requested and a state appointed mediator will render a decision.

If your child is found to be a child with a disability, the school district must schedule an IEP within 30 days of the eligibility ruling. You will receive a formal invitation to your child’s Individualized Education Plan, where you will, together, as a team, decide what is best for your child and the services that he needs throughout the school year to make him or her a successful student.

The IEP Meeting

View your IEP like a business meeting. You want one thing, the district may want another. You have to work together to come to an amicable solution. Most of the time, the district is not your enemy, but remember… they have budgets. Our advice is to go into your IEP with CAUTIOUS OPTIMISM. Although your child’s teachers and administrators probably do want the best for your child, don’t forget that they are also…… well….. administrators. You must work together to come up with what’s best for your child. How you handle yourself at the IEP is very important. Be firm, but not demanding. Be nice, but don’t stamp “door mat” on your forehead either!

In the IEP, your team will discuss what types of services and supports your child will need. This includes speech therapy, occupational therapy, physical therapy, paraprofessional services, etc. You have to remember A LOT of things, but remember, nobody is chiseling the words into stone — you can always reopen your IEP at a later date. We’ll get more into the specifics of the actual IEP later.

Part of the IEP meeting process is talking about Recommended Educational Placement. You will discuss the location (where) the team feels your child should attend school. You should know your options — you can have your child placed in his or her home school in a regular education class with typical peers, you can ask that your child be placed in an autism support class or life skills classroom for part of the day or the full day, or you can ask that your child be placed OUTSIDE the district in a private school that specifically caters to children with disabilities. If the school agrees to an outside placement, your district must pay the tuition of the private school. It must, however, be an APPROVED private school — one that has been approved by the state. (Again, state laws differ, be sure to check with your State’s Department of Education for more specific information.)

You also have the right to ask for your child to have a 1:1 aide or paraprofessional to stay with your child throughout the school day. The school may or may not approve this request. You can also request to have a “shared” aide, where your child and another child with a disability can share one paraprofessional throughout the day.

Once your agreement is ironed out with the school district, you will sign the IEP. The school district MUST PROVIDE all of the services that were agreed to in the IEP. You will be given a copy of the IEP as well as your child’s teacher and other caregivers. Progress should be measured and reported back to the parents at regular intervals, as agreed upon in the IEP. (Our suggestion is at the very least, a quarterly progress report should be issued to the parents. Make sure that this is written into the IEP.)

And Finally…

Your child’s IEP will be reviewed on an annual basis, and, according to Federal Law, your child must be re-evaluated by the school psychologist once every three years to re-determine eligibility for special education services.

Autism in Schools — For Teachers:

So you have a child with autism in your classroom. What’s next? How do you know what to expect? How will you handle it?? Here are some suggestions from AutismLink, and there are links to other sites below:

Classroom Strategies

• Meet with parents, the student and professionals to determine needs of the student.
• Develop an Individual Education Plan (IEP).
• Work as a team. Keep in touch on new medication and possible side effects, and on mood, personality and environmental changes.
• The student with autism, like any other student, may be more alert in the morning or the afternoon. Whenever possible, structure the learning period according to the student’s pattern of response.
• Allow the student time to become familiar with routines and environments. Try to maintain these with as few variations as possible.
• Understand that the student has a unique learning style and gear activities to the individual child, e.g., modify time limits.
• Choose activity-based learning; use concrete, tangible and visual aids. Processing abstract concepts is frequently very difficult.
• Help the student focus on learning: pre-teach, teach and post-teach.
• Strengthen communication skills. Focus on language processing in an ongoing language training approach.
• Help the student organize: use calendars, timetables, photos or pictures of activities in sequence. Remind the student what comes next.
• Cue changes to new activities: help the student anticipate changes before they take place.
• Be as familiar as possible with any specific aids.
• Incorporate and understand behavioral methods as learning strategies.
• Allow time to process information.
• Teach from a functional point of view, avoiding abstracts.
• Watch for over-stimulation: help the student settle down. This may require the substitution of an equally stimulating activity or a change of environment. If necessary, arrange for “time out.”
• Integrate social skills, self-control and social problem-solving. Repeating a routine of chosen behaviour is your best resource.
• Incorporate a system of tangible rewards, e.g., a social outing.
• Encourage social interaction with peers, while still allowing access to “time alone” if necessary.
• Establish expectations and consequences. Expect acceptable and appropriate behaviour.
• Be realistic in your expectations. The student will function better in a structure common to home and school.
• Plan for success, constantly reinforce small steps, but be prepared for long periods with no apparent progress.
• Talk to the class about autism and have the student or parent explain any needs. Encourage other students to find out how they can assist and how they should assist.
• Develop a real understanding of the nature of autism – be informed. Read, research and visit other classrooms.
• Talk to other teachers in the AutismLink Discussion Forums!
• What are some tips and strategies for helping students with autism achieve their fullest potential? And how can teachers cultivate the best learning environment in their classrooms? Explore these and other issues surrounding Autism in the Classroom.
• Classroom Strategies — This document starts off with the basics of autism, but if you scroll down to the end, there are lots of great ideas on how to deal with autistic children in the classroom. It explains “literalness” of thought, concrete thinking, etc.!
• TEACCH Classroom strategies
• OASIS — Click on the “Education” tab on the left — lots of resources.

Toilet Training for Individuals with Autism & Related Disorders by Maria Wheeler — Researchers report that individuals with autism are the most difficult population to toilet train. Without this skill, however, social acceptance might remain a distant wish while self-esteem, finances, time and energy can be eroded for everyone in the family. Contains over 200 toilet training tips and more than 40 case examples with solutions.

Anti psychotics Used in Autism:

Neuroleptic medications, also known as anti psychotics, are used to treat a wide variety of serious mental illnesses. Most of the anti psychotic medications affect dopamine production or absorption, but some also act on serotonin or other transmitters. The two groups of anti psychotics are Conventional anti psychotics and Atypical anti psychotics

Atypical Anti psychotics include Risperdal (risperidone), Seroquel (quetiapine), Zyprexa (olanzapine), Zeldox (ziprasidone), Clozaril (clozapine), and Abilify (aripiprazole).

• This site has a list of TONS of articles regarding the use of atypical anti psychotics in autism.
• Atypical Anti psychotic Use in Children with Autism
• Control of Aggression: Anti psychotics, Anti epileptics & Anti hypertensives

SRI’s (Selective Seratonin Reuptake Inhibitors)/Antidepressant Use in Autism

Medication may be used in autism to treat attention issues, anxiety, or overall mood. These drugs will often reduce symptoms such as perseverative behaviors, tantrums, irritability, aggressive, and social responsiveness. Antidepressants include Amitriptyline (Elavil), Bupropion (Wellbutrin), Clomipramine (Anafranil), Fluvoxamine (Luvox), Fluoxetine (Prozac), Paxil, Celexa, Lexapro, Effexor

Antidepressant Use in Autism

Autism and Treatments with SSRI Antidepressants

A list of medications and an explanation of each by autism-resources.com

Stimulant Use in Autism

Ritalin, Adderal, Concerta, Metadate,

Use of Stimulants in Autism

Medications Used in Treatment

Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed “off-label.” This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.

A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the “patient insert” that comes with your child’s medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.

Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI’s) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI’s, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI’s safely, effectively, and at the lowest dose possible.

Behavioral problems. Anti psychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical anti psychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems.25 However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.

Placebo-controlled studies of the newer “atypical” anti psychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).26 Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical anti psychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.

Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.

Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.

Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child’s unique history and behavior will help your doctor decide which medication might be most beneficial.

Although you need to struggle to meet the demands of your child with autism, there are others in the family to consider. How to cope with the situation is often one of the most stressful parts of autism. Often, in our conferences and seminars, the issue of siblings and autism, and balancing life at home is the biggest hot-button topic and most widely discussed.

How To Explain Autism to Siblings

It is our belief that children are a bit smarter than we tend to think. Your autistic child’s sibling more often than not knows that something “just isn’t right.” This often translates into feelings of guilt or responsibility. Children tend to internalize these feelings and blame themselves. The best way to handle that is to be open and honest, and tell your child the truth. If you feel your child is old enough to even partially understand that your autistic child is “special” or different from other children, do so, but give the child only as much information as you feel he or she can handle. One way you may wish to explain autism to your child is to say “autism makes your brother/sister special, it makes him/her think differently from most people.”

Your child may have difficulty in understanding why their sibling gets to do things that they can’t do, such as spend time with a therapist. Making special time between you and your typical child or children is important. Schedule “Mommy & Me” times where the two of you play games, color, or participate in enjoyable activities together. Make sure your child knows that you are available for them to have your own “special time.” Get a sitter, if you can, or ask your spouse to stay home while you take your other child out, or simply hide away together in a room in the house to have your special time. It makes them feel special, and not left out, and it will ease your mind considerably.

Teaching younger siblings about autism is a good thing. Often, these children are more understanding and accepting than we think. They will find ways to communicate and play with your other child. Make it part of your child’s therapy plan to include his or her siblings in activities. We even suggest that your child’s therapy team make a goal for appropriate sibling interaction. This will not only help your autistic child in communication and interaction, it will help your typical child learn how to interact. Often, siblings pick up on many techniques and cues from therapists, and become what we refer to as “little therapists.” Remember, as always, necessity is the mother of invention. Where there’s a will, there’s a way. Your children will FIND a way to communicate together if the typical child(ren) are included in some of the therapy sessions.

As your children mature, some issues that tend to crop up in typical teens are anger, embarrassment and guilt. Anger at having a brother or sister with a disability that forces them to make sacrifices, embarrassment toward their sibling’s behavior, and guilt from being typical and fear of independence due to feelings of guilt.

The teenage years are difficult, that’s a fact. Add an autistic sibling to the mix and you have a difficult situation on your hands. Most typical teens experience the “all about me” stage during their teenage years and can begin to show resentment or anger toward the family situation. Our advice is, first and foremost, to realize that this is a difficult journey for your typical child as well, and adolescence is an incredibly difficult time. Be calm and understanding, and try to realize that this is very normal. Second, keep reiterating to your typical child that autism was not a choice, was nobody’s fault, and that you are and will always remain a family.

If your child continues to feel angry or depressed, and says things like “I wish my brother/sister were dead,” they may be in need of more help than you can provide. You may want to consider family or psychological counseling for your typical child to help him/her deal with these feelings. Often, a non-biased outside source can provide tremendous help and insight and validate your child’s feelings.