The Importance of Parent Communication
There's a big difference between people who view their work as a j-o-b and people who are passionate about what they do. When I see someone passionate about helping others, I get excited! I get inspired! Michele Pettenati is one of those people who has a passion and love for what she does. Recently I had the opportunity to chat with Michele for a bit and she shared why parent communication is such an important part of her work.
Hi Michele. Thank you for taking the time to be interviewed. Please tell us a little bit about your work experience.
I am a Certified Occupational Therapy (OT) Assistant and I've been working in the OT field for 31 years. During that time, I have serviced 600 or more students in a few different school districts.
Wow! That's pretty amazing. What is your typical work day like?
I work 8:10 AM to 3:16 PM each day. I have a schedule that I follow and each half hour of the day is used for a different student. Students are transported to my room and each child has his or her own lesson plan and goals. We work on fine motor skills and strengthening. I am a salaried position but my work day does not stop at 3:16. I usually complete my Medicaid paperwork until 5 p.m. Then go home to see my family. After dinner I spend one or two hours each night working on lesson plans and searching the internet for ideas for fine motor activities. I also work on continuing education of my skills. I take courses on OT Today and I love to work on making my program the best that there is. Throughout the day and even evenings, I also make parent contact.
You certainly have a busy work week. What type of things do you do to stay in contact with parents?
Parent communication is so important. At the very least, we have annual IEP meetings that I attend. However, I call or email parents when it is necessary to discuss a problem or concern. I also love contacting a parent when a child has successfully completed a goal! Monthly team meetings, parent conferences and quarterly report cards are key as well.
Why is parent communication important to you?
I am happy that parents feel free to share their child with me. I feel that if there is a problem or a question the parent is the first person that should know about their child. Without their input, most goals and plans for each child are not really personalized.
Is there a "success" story that you care to share that supports the importance of maintaining good communication with parents?
All children are a success whether it is big or small. I had a student one time that could not tie her shoe. We worked on it for many months. When this student could finally tie her sneaker, mom was called and she bought her daughter a new pair of TIE sneakers. This student was so proud of herself and she is a living working productive member of our community today!
That's a great example! I also remember a mom who celebrated her daughter's OT milestones by bringing us McDonalds at lunch time! What advice would you give to other OT providers regarding parent communication?
Parent communication is very important and it is fun to get to know the family. It gives a full picture of who the child is and where he or she has come from. Knowing the family and learning about the child's home life to me is the most crucial thing. When you are working on the goals of a child, a parent's input is vital.
What advice would you give to parents regarding communicating with their child's OT provider?
Most children have a communication log or notebook that the parent can write in and we would love to hear from the parent daily. Be honest and be open and realize that the OT is there to help their child. When we ask you to come to a parent conference or an IEP meeting or a team meeting make it your priority. We do want to
meet with you.
Anything else you care to share?
I love what I do and I enjoy the love that I share with all my students.
Thank you for your time Michele and for your passion in being an OT provider. You'll never know the full extent of the impact that you're having on students and their families. Keep up the great work!
The Team Roster
“We’ve found your child eligible for special education services.” Maybe these are the words you’ve hoped to hear, and maybe they are the ones you’ve feared. Maybe it’s a little bit of both. Whatever your reaction, there are a number of important decisions need to make right after hearing those words at the IEP meeting. This may be difficult, as so many thoughts pass through your mind. “Who are these people sitting at this table with me as we decide my child’s future?” That is a very important question, and one we will discuss here so that you will have a leg up when you go for your eligibility meeting.
According to the Individuals with Disabilities Education Act (revised in 2004), there are several people necessary to an IEP Team. These are the people who would need to be at your IEP meeting:
- Parents of the child
- Not less than one regular education teacher, if the child is or may be participating in the regular education program at all
- Not less than one special education teacher/provider
- A representative of the school who can interpret evaluations if necessary
- A person brought in by you, the parent, as someone who can contribute to the meeting
- The child with the disability, if appropriate. The child must be invited if the purpose of the meeting is to discuss post-secondary goals and transition services are needed.
Child Study Team Roles
The Child Study Team is a portion of the IEP Team. They are a multi-disciplinary team who may or may not be housed in your child’s school. One member of the Child Study Team is usually assigned as case manager for your child. This is the person whom you should contact with questions regarding IEP implementation, particularly if it is a question the teacher cannot answer.
The psychologist is the member of the team who assesses your child’s developmental and cognitive abilities. During the initial evaluation, the psychologist will usually administer various tests which evaluate these abilities in both verbal and non-verbal forms. Copying puzzles, remembering series of numbers and being able to repeat them backwards and forwards are just two examples of tasks your child may be asked to perform as part of the school psychologist’s evaluation. This is the person your child may see should a crisis arise during school time.
The learning disabilities teacher-consultant (LDT-C) is someone who is trained in assessing your child academically. This person is a certified teacher who has gone through the training which allows him/her to evaluate where your child is now in the learning process. They are aware of various learning styles and help to create an academic plan for your child. This is the person you should consult with regarding the academics of your child.
The social worker is the member of the team who deals with the interactions of your child in relation to family, school and community. The social worker may evaluate your child and one or both parents or guardians of the child. The social worker may visit your home to get a better idea of the social interaction there. Part of their evaluation of your child may include asking you questions about their self-help skills. You may want to notify the social worker of any major changes in which you think may cause shifts in behavior and performance in your child.
Other Possible Team Members
Depending on what type of services your child needs, there may be several other team members involved, such as a behaviorist, physical therapist, occupational therapist and/or a speech-language therapist. These professionals bring their expertise to the table, and may be involved if your child needs any of these services.
Your Key Role
Finally, you (and your child, if appropriate) are an important member of the IEP team. If you would like to, you may bring a family member, friend, or advocate with you to support you at the meeting. An advocate can be anyone familiar with the special education process. Some states have lists of approved advocates that you can choose from. Speaking with other parents in a local support group is often a good resource for finding a strong advocate.
Everyone at the table comes with the same intention—that is, to assist your child in reaching their potential. Everyone may have different ideas about how to do that. Come to the meeting prepared, but with an open mind. You will be glad you did.
529 and UTMA accounts for individuals with special needs
Keeping up with Social Security rules and regulations can be a riddle wrapped in an enigma shrouded in mystery. The worst situation is when you get conflicting advice from two people and then a third opinion from your local Social Security office. Its important to give truthful facts when dealing with your local Social Security office and report all income and assets. A tricky situation is often presented when dealing with UTMA (Uniform Transfers to Minors Act) accounts and 529 Plans and disability. A typical situation regarding these assets looks like this:
Tom is 18 and has downs syndrome. His grandfather set up a UTMA account for him when Tom was 2 years old and the account balance is $15,000. Tom's grandmother also created a 529 plan when Tom was young and the balance has grown to $35,000. Tom's parents are going to apply for SSI and Medicaid (or Medical Assistance) for him and they need to know what to disclose as an asset to meet the means test requirements for the benefits. They should be truthful and disclose both assets but ultimately he has a problem on his hands.
First, lets understand what a 529 Plan entails. 529 Plans are education savings plans operated by a state or educational institution where the beneficiary can use distributions for post-secondary education expenses at a qualified educational institution. 529 Plans get preferential tax treatment under Federal income tax rules and can be created for a beneficiary at any age. Some states allow for income tax deductions for contributions to 529 Plans as well.
Second, an UTMA account or a Uniform Transfer to Minors Act account (also called UGMA or Uniform Gifts to Minors Act accounts) is established to safeguard monies gifted to a child that has not yet reached the age of majority. A custodian oversees the funds until the child can receive the funds. When the child can receive the funds depends on state law.
Lets go back to our situation. If Tom applies for government benefits, the 529 plan would not be seen as a resource to Tom. The plan is owned by Tom's grandmother and Tom has no right to withdraw funds from the account. Tom's grandmother could always change the beneficiary on the plan. Therefore, the 529 plan would not be considered a resource of Tom's and would not cause him to become ineligible for government benefits. What would be important, though, is making sure that the distributions from the 529 were used exclusively for educational expenses (which do not include food, clothing or shelter) so that distributions are not counted as income for Tom.
UTMA (or UGMA) accounts are treated different by your Social Security Office. The UTMA accounts are not counted as a resource until the child reaches the age of majority. Again, state law will determine when the account will be counted as a resource but it will eventually be counted and could cause the child to be ineligible for government benefits. Therefore, UTMA/UGMA accounts should be addressed sooner rather than later and you should always contact an expert concerning benefits in your state. It may be the case that the child starts receiving government benefits and only later when they reach a certain age (under the state law of majority) does the UTMA account cause the individual to become disqualifed for benefits. Since the assets held in the UTMA account are likely to cause issues, spending it down or a payback special needs trust may be option to consider. (see our Payback Special Needs bootcamp here)
Things to remember:
- Always be truthful with your local social security office. But it always makes sense to sit down with your financial advisor or your attorney before you file for benefits for your child to see if there are any assets that may be counted as a resource and cause your child to be ineligible for benefits and do something about it.
- 529 plans offer the ability to save for educational expenses with tax benefits. The account owner, though, should be cautious in how she applies distributions for educational expenses to ensure that it won't be considered a resource.
- UTMA accounts or UGMA accounts should be addressed before the individual with special needs applies for government benefits. It is possible that the monies could be spent down on the special needs individual or a payback special needs trust could be done. Always consult with an expert.
Navigating the Waters of Placement in the Public School System
Your child was just determined eligible for special education services in your public school system. Sitting at an IEP meeting and listening to someone on the team list the array of possible placements for your child, with all their pros and cons, can be overwhelming. Who wants to make a decision that will affect your child’s life, based on a five minute snapshot of information during an already stressful situation? Wouldn’t it be an advantage to understand these placements before the actual moment in which you’ll make that decision? This article will do just that: identify and explain typical public school special education placements, along with their pros and cons.
Least Restrictive Environment
Schools are, by law (the Individuals with Disabilities Education Act, 2004), required to provide a student with the least restrictive environment (LRE). This means that, to the extent possible, your child should be exposed to the general education curriculum and be placed with the general education population. The LRE is not specifically defined, however, because just as every child is different, so too will the LRE for that child be different. For the purpose of this article, we are going to presume that the public school setting is deemed appropriate for your child. Within that system there are many different types of placements. We are going to start with the one that has the maximum time with the general education population, and move our way back to the most isolated placement in a public school.
Mainstreaming is, literally, putting the classified student in the general education classroom with little to no accommodations. This can work if the general education teacher is able to work well with a student who has a disability. The student must be near grade level in that subject and able to conform for the most part to the rules of the classroom in order for this to be successful.
Inclusion has been the buzzword since the mid-1990’s. In an inclusion class, there are two teachers, one of whom is certified in general education and the other in special education. The two teachers co-teach. They both teach the entire class at the same time. The way they do this depends on the needs of the students. At times, they may teach the class as a whole, taking turns leading the lesson. At other times, the special education teacher may split the class or take a smaller group to reinforce the class work. The special education teacher also modifies the materials as necessary for the classified students. This may include class work, study guides and tests. Students who are in inclusion settings usually have lunch and electives (i.e. art or music) in the general education setting.
Some students require the support of a small group setting. A resource room is taught by a special education teacher. Usually, these students spend part of the day, including homeroom, lunch and electives in an inclusion setting. They go to the resource room for the subjects that they need the most help with. The students get more individualized attention and learn at their own level. The pace is usually somewhat slower than the general education classroom. Teachers are able to tailor lessons to the students’ needs. After the class numbers reach a certain amount, it is required by law that a paraprofessional be in the room for extra support. This number varies by the grade of the student, the classification of the student, and by state.
The classroom that provides the most support for the student is the self-contained classroom. In this classroom, the student is taught in a small group all day. Students in this classroom usually report there for homeroom and stay there for all academic subjects. They typically have lunch and electives with their peers in general education. The pace and level of the work in a self-contained classroom is tailored to the needs of the student. After the class numbers reach a certain amount, it is required by law that a paraprofessional be in the room for extra support. Again, this number varies by the grade of the student, the classification of the student, and by state.
More and more, students are spending there days in more than one of these settings. IEP teams are realizing that it is beneficial to these students to spend as much time in the general education setting as possible. Regardless of their placement, the goals and objectives of your child’s IEP must be followed. Hopefully, you now have a better idea of the options available to your child in the public school setting. Remember to come to your meetings prepared, and with an open mind. It is always your right to call another meeting in between your annual reviews if you believe it is necessary.
We interviewed Leslie Walker-Hirsch on her new book The Facts of Life...and More: Sexuality and Intimacy for People with Intellectual Disabilities. UNFORTUNATELY we had technical difficulties with the video recording but the audio recording is below. You can find more information about the author at her website here and purchase the book on amazon here. Also below is a transcript of the interview.
Hey Everyone, we are talking with Leslie Walker-Hirsch, she is the author of the book The Facts of Life...and More: Sexuality and Intimacy for People with Intellectual Disabilities. A very important topic, Leslie thanks so much for talking with us.
Thank you very much for inviting me, I'm happy to be here.
I guess I'd like to start with your background and why this topic is so important to examine?
Well, thats a really good beginning, my background is that I have a masters degree in Special Education and Administration so I am very aware of the needs that people have for unique learning materials and that people with intellectual disabilities really need to know everything that everybody else knows and can learn those things if they are presented in the right way and in a manner that is consistent with any of their learning idiosyncroses. And sexuality is a very hot topic and people are afraid of it because they really don't know what to do. Families are afraid they will tell their children the wrong thing or that tell their children nothing and their children will make some kind of an error that will cause them to be taken advantage of or be accused of taking advantage of others. Not because of any maliciousness but because they are ignorant of what to do.
Interesting. I know your book focuses on educating the educators, and i guess from your perspective, what ways are colleges and universities not preparing future support individuals like teachers, psychologists, social workers concerning these issues?
You know, I teach a course in the graduate school at the University of New Mexico and related to that course, with my department leaders, Ruth Luckasson and an associate Sun Su Park, we did an informal research about what courses are being offered on this subject around the country. And although part of this survey was was this important, everyone agreed that it was. And yet, this seemed to be the only course in the United State that was offering this training to special education teachers and PHD students in psychology and social work. So there's a void of information. And I think that partly explains why teachers in the classroom, in a public school, don't know what to do because they've never had any information on how to handle some of these subject. You know, in the schools now a days, kids with intellectual disabilities and developmental disabilities are included as to the extent that they can be. And so the health classes almost universally one that includes them and yet the other kids in the health class that are the typical kids have a whole different set of information and whole different set of needs about sexuality education. And so a lot of the information that's presented goes too fast, is not presented in a way that that uses a unique instructional materials that are pertinent to the kids who have intellectual disabilities and who don't learn it in a conventional way. And so the information goes right over their heads. You know, I had a student tell me she is not going to school anymore because she learned in her health class that teenagers drink, do drugs and have sex. And she's not ready for that. So they get little bits and pieces of information and don't always know how to put that together into their own lives to be meaningful.
And I guess, to take that educational type of perspective, how would we help parents with this issue?
Well you know, parents are the first and most important, and I emphasize, the most important sexuality educators of their children. And sex education really begins not in a classroom but as soon as that little child is born, whether they have a disability or not, whether they have brown eyes or blue eyes, brown skin or white skin. It all begins as soon as that child enters into the world. So the child observes the parent, how does the parent express affection to their child, how do they express affection to each other. Are they reserved, are they effusive, do they dance in the kitchen or does everybody give each other the silent treatment? How do they express anger to each other or disappointment with each other or the child? The child frequently will copy that. If there is physical violence in the family the child will copy that too. If there is genuine affection the child will experience that and be able to express that generosity of spirit to other kids. And become a more likely friend in the real world as they move into school and into adult life.
What is a common misperception about individuals with intellectual disabilities and sexuality and intimacy.
You know, ironically, there are two absolutely opposite misconceptions existing at the same time. On the one hand, people believe that people who have intellectual disabilities do not have sexuality, do not have sexual drives, do not need to have any information at all about sex because they are not likely to be sexually active with another person. And coexisting with that sorta innocent, eternal child belief will keep this person with a disability as a little girl or little child forever because actually they are. Except they aren't. So thats one myth which is totally untrue.
And on the opposite side, they think that people who have unusual physical appearance, or unusual learning styles or speech patterns, that those people are likely to have deviant sexuality which is not true at all either. In the scope of things, people with intellectual and developmental disabilities have the same range of interests and hormones that everyone else has.
How is supporting and educating individuals with intellectual disabilities age dependent and disability dependent?
You know, families are pretty well able to ignore sexuality at least until puberty. And then when puberty hits they really can't ignore it anymore. But there is a lot of water under the bridge by the time the child reaches puberty. In this day in age, according to the former health editor of the New York Times Jane Brody, puberty now starts as early as age six. Now thats two or more years earlier than puberty began when, well the earth was cooling and I was in puberty. So for people with intellectual disabilities, this creates a real difficulty in that biologically they are the same age as their peers, but emotionally, socially and experiencially they are maturing, generally speaking, at a slower rate than they are biologically, so the chasm between managing adult drives, adult hormones, adult hygiene, adult attractions, adult emotional experiences is even greater than it is for typical kids, who are already having that same difficulty because of the early onset of puberty these days.
You know, a lot of people say my child doesn't need sex education or sexuality education because my child has a disability and is not likely to have a partner, not likely to have children, is not likely to marry. However, people with intellectual disabilities are between 6 and 10 times more likely to experience sexual abuse in their lifetime than their same sex age peers. And while parents don't realize it, what makes a person a very good victim is not somebody who wears low cut clothes or dingle dangle earrings but its a person who is believed to be ignorant, a person who doesn't have a strong social support network of friends and family, a person who is socially isolated and desperate. So that that person will respond to just the smallest bit of attention and the smallest bit of acceptance that they get from a predator who is looking for a victim. So without information and with ignorance, a person becomes a much more likely victim for a predator that's is looking for one. And they are out there, we know that.
So, sexuality education, not just, you know, a reproductive education but sexuality for living. How to live in the world as an adult man or woman. And how to be responsible, and how to stay within the law, and how to stay safe is an important aspect of sexuality education especially for this group. And in the schools, I find that when they are included in the biology class they get a biological orientation to sexuality. In the health class, they get an orientation about staying healthy and preparation for marriage and family but none of those teachers are trained in special education to use special education techniques to teach this subject. And what is really important for this group is the social aspect of sexuality education. How do you express the fact that you like somebody? What does it mean to be a friend? What does it mean to go out on a date? How do you go out on a date? Who is a likely candidate for your romantic affections? Its not your teacher. Its not your mom. Its not your dad. And its certainly not the school bus driver. Now, the school bus driver is the most reported incident of sexual offenders, not that they are offenders but its the most frequently reported. We know that most offenses against kids with intellectual disabilities are not ever reported and nobody really really knows how many there are. I just heard on the news this morning out of Albuquerque, New Mexico, that a custodian at one of the schools has just been charged with soliciting sexual favors from a student at the school. This goes on and on and on. And sexuality education and recognizing social boundaries and differentiating the kinds of expectations you have in different kinds of relationships is really the area that our kids with intellectual disabilities need education and they also need training and extra time to practice, to be scripted, to know what to say. What do you say if someone says sex me something on your phone. What do you say, if somebody says to you if you send me a naked picture of you, I'll be your friend. I'll let you have lunch with me. What do you say when somebody says that, how does a student counter that. That's part of what sexuality education needs to be in the school not instead of health class but in addition to that. And parents have an important role in making friendships continue outside of the school. Because a student who has friends is a much less likely victim of a predator. I know that sounds a little odd but its the truth when you know that you are liked and loved and have something interesting to do every day. You are much less likely to be seduced by a predator.
At what age would you consider then that the education begins.
It begins as soon as the child is born. Not by sitting in a classroom at a table. But really by living and learning. How do you show mommy that you liked that cereal that you are having. And you teach the child to smile. And you smile back. Now I know that a lot kids with autism are much more difficult when it comes to asking them to follow what the parent is doing because they often look in a different direction or not as present as we would like a child to be. And so it becomes a little more difficult. But most of the time, kids want to please their parent. If the parent reacts positively when the child smiles, the child is more likely to smile more. And if the parent smiles back and the rest of the world smiles back they get that interchange and feedback. And that's really the beginning of sex education. If a child spills his orange juice and gets smacked on the hand for it, well that's sex education too and they learn that when someone does something you don't like you hit them and that's not what we want children to learn. And parents really have to practice what they want their children to learn. You know, in some families, modesty is an issue. Some families, people are more casual with their modesty. And other families everybody covers up all the way. And yet, when the child goes to school they are exposed for the first time to what every other family thinks is modesty. And so they have to really be prepared in that way that your kids will come home from school with learning things you never taught them because the kids sitting next to them taught them that. To learn to close the door to the bathroom is something that may seem obvious but since a lot of kids are later in toilet training skills parents often need to participate for a way longer time in that actual setting with their children. But to help the child understand that this is mom and mom and dad are the only people who are allowed to be with you. When they go to school to learn that when you use the toilet it needs to be private. And what does privacy mean. And to be able to ask for that if they don't have it.
Parents, on the other hand, need to allow their child to have a little privacy. To learn that not only does the child need to knock on the door so does the parent. And to get to develop that as an expectation of how you get privacy. And what things you're allowed to do when you are in private. Well, you're not allowed to wreck your room, you're not allowed to throw your toys all over the place. But you are allowed to explore your body and to see what feels good to you.
Well, I think its a very important topic for parents to learn more about. And I am going to put links to the book on Amazon on the website so people can find it. Do you have anything else to add, I know you are going around and giving some talks right now. But anything else to add?
Well, not at the moment. I will be out in West Chester, Pennsylvania this coming week and will have a chance to talk with the special education teachers in that school area and I'm very delighted to do that. I do travel and train school districts not only in sex education per se, but also how to use the Circles curriculum, which is a multimedia video curriculum that teaches social boundaries to students with developmental and intellectual disabilities and that are used very widely throughout the country.
We may have to have you back on to talk about that.
I can't wait, this was lovely.
Well thank you very much.
Thank you for having me, so long.
We are talking with Jeremy Brenn of Sensenig Capital Advisors located outside Philadelphia. In this interview we discuss the beginnings of special needs financial planning. While some people avoid hiring a financial advisor because of procrastination or of the presumed cost, one of your best investments may be finding a trustworthy, qualified advisor. There are life events that a qualified advisor can help develop a plan for so that it can be implemented at the right time. The worst mistake would be to wait too long to do financial planning and then haphazardly put something together. We've broken the interview up into a few parts:
- What does a Financial Advisor do?
- What would the first steps be when sitting down with a Financial Advisor?
- How does a Financial Advisor work with other professionals to put a plan in place and what is the letter of intent?
- What are some considerations families should keep in mind when looking for a Financial Advisor?
As you can see in the interview, Jeremy stresses the importance of interviewing a few different advisors and making sure they have experience working with special needs families. Below is a diagram that illustrates how a Special Needs Financial Plan would be put together and issues that need to be considered.
Make sure you understand how they charge and keep notice of any potential conflicts of interests, as some advisors are incentivized to sell particular investments that earn them commissions. Also remember that some advisors only work with clients above a certain net worth but you may not need an advisor to that extent but an advisor you could pay by the hour or a set fee.
What is Applied Behavioral Analysis?
Applied Behavioral Analysis is an objective and reliable method to help children with autism-spectrum disorders and other developmental disabilities learn desirable behaviors, such as social and life skills. Applied Behavioral Analysis teaches children and young adults how to communicate effectively with others, to independently care for themselves and to self-soothe in the event of anxiety or problems. ABA teaches new skills through instruction and reinforcement or rewards. The skills or behaviors are repeated until they become routine and can be maintained without instruction. Instructors will then assist those with developmental disabilities to transfer the skills and behaviors from the learning setting, usually the home or a classroom, to everyday life situations.
Intensive ABA therapy has made a great deal of difference in the behaviors and abilities of many autistic individuals. According to Autism Speaks, research finds that this therapy is an effective way of building skills for adolescents and adults with autism spectrum disorders. It is also a useful technique for family members to use to help manage some of the difficult behaviors that accompany diagnosis.
- It encourages the development of desirable behavior through structured measures.
- In many cases, IQ scores have risen, and the severity of autism significantly reduced.
- Some children treated with ABA therapy have been able to leave the special education classroom behind while entering mainstream classes.
ABA shows its best results when begun before children reach the age of five and when put into practice 20 to 40 hours per week with one-on-one support. However, the approach has been successful with older children in many cases as well.
How ABA Works
ABA is a strong, evidence based approach to helping children with autism learn. ABA theory uses a basic model of rewards to reinforce positive behaviors and consequences for undesirable ones, expanding this model to encompass a wide range of circumstances. Larger goals are broken down into small, manageable steps, each one rewarded as its own accomplishment.
Specific Types of Applied Behavior Analysis
Discrete Trial Training
Discrete Trial Training is a form of ABA that breaks down the desired skills to be learned into smaller, manageable steps. Discrete trial training is a way to teach more complex behaviors or to assist children and young adults with severe disabilities learn skills and behaviors more effectively. For example, DTT can help a young child learn to write his name by first teaching him to hold a pencil or crayon, then teaching him to write each individual letter, and finally combining those letters to write his name. Other tasks that can be taught using DTT are brushing teeth, washing hands or making a simple microwave meal.
Forward chaining - the student masters the first step before the second step, the second before the third, and so on.
Forward chaining ABA for hand washing:
- Student turns on faucet
- Instructor wets hands
- Instructor uses soap dispenser or bar of soap
- Instructor lathers student's hands
- Instructor rinses student's hands
- Instructor turns faucet off
- Instructor dries student's hands with a towel
Backward chaining - the student learns the steps in reverse order.
Backward chaining for hand washing:
- Instructor turns faucet off
- Instructor wets the student's hands
- Instructor uses soap dispenser or bar of soap
- Instructor lathers student's hands
- Instructor rinses student's hands
- Instructor turns faucet off
- Student uses towel to dry hands
Once the student masters drying her hands, she moves on to turning the faucet off, and so on.
Length of Therapy
Most ABA programs last for a period of two years. You will sit down with the therapists and teachers prior to your child’s therapy and work out a treatment plan, discussing the skills your child needs to learn and any obstacles he needs to overcome.
During the two-year period, your child will meet with teachers or therapists for 10 to 40 hours a week, depending on how severe his disability is and how much intervention he needs. This time will be spent one on one to learn the skills and behaviors identified in the treatment plan. Your child will probably also attend a specialized school or classroom several hours a week; this is to help develop social skills and integrate the learned skills into everyday life. Younger children may have play dates with one or two children instead of a classroom placement. You will usually meet weekly with your child’s ABA therapist to discuss progress and problems. You will periodically need to update your child’s treatment plan to reflect changing objectives and implementation of skills.
ABA therapy is not time limited and could be shorter or longer than the anticipated two-year period. Children with multiple delays or disorders, such as a learning disability mixed with autism, can require more intense intervention to reach a functional level. Children who demonstrate acting out behaviors and tantrums will likely need longer intervention time, as the negative behaviors will need to be controlled before any learning can take place. Children who receive less one on one program hours due to funding issues or lack of qualified personnel could also require a longer period of ABA therapy.
How You Can Help
Another way to help your child and possibly shorten the length of time required for learning to take place is to become trained in ABA therapy yourself. This can be beneficial for you and your child, since knowing how to handle and help your child learn away from therapists can create a less stressful home environment. You can also purchase applications for your computer or cell phone to help track behaviors and teach your child at home.
Housing Concerns For Individuals With Disabilities
Among the most important values and goals shared by people with disabilities, their families, and advocates are being part of the community and living as independently as possible. A home of one’s own – either rented or owned – is the foundation of freedom for people with disabilities. As those with disabilities age, several questions about their future care become relevant: Will he or she ever be able to move out of the family home? With whom will they live? Where will they live? Who will take care of them?
Trying to coordinate housing for those with disabilities can often be challenging. Preparing for home living means more than simply finding a place to live. Home living takes into account any supportive services that person might need, for example, healthcare and medication management, financial management, social and recreational needs, mobility issues, legal rights, self-advocacy, and transportation concerns. Also, It may be difficult for a family to imagine their child living on his or her own.
The first step in the process is to talk about visions for the future from the viewpoints of both the family and the disabled person. Even though starting this process at age 14 may seem premature to some families, it is important to begin this process then, however, so the child’s future is centered on what is best suited for him or her. This type of planning for people with disabilities is called “Person-Centered Planning.” It is a way of thinking that focuses on the dreams, outcomes, and visions of the individual. It is a process guided by an individual’s and family’s unique vision, likes, and dislikes. Person-Centered Planning focuses on the people and families rather than programs, and is a way to bring together everyone important to the person: family, friends, neighbors, support workers, and other professionals. Some questions to keep in mind when assessing the individual’s needs and wants for housing include:
- Where does the person want to live?
- What do they need to be happy?
- Can he or she live alone or is support needed?
- How much support does he or she need now?
- Are there any health and safety issues to consider?
- Will they need to live close to family as part of his or her support system?
- Would the individual like to live by him- or herself or with roommates?
- What are the characteristics of those who will best support the person?
- What kinds of housing options are available in the community?
- What is the neighborhood like? Is the residence accessible? Is it affordable? Is it near transportation?
After gathering this information, the results will need to be discussed and a plan developed in order to see how housing might fit into the picture. Keeping in mind the person’s vision, it is important to identify the main considerations for achieving a desirable lifestyle: What are the disabled person’s hopes and dreams? What level of independence does he or she desire and what supports will she or he need to achieve these goals? Some of the essential factors to consider are education, individualized training, successful employment, and an integrated life in the community. If the individual is unable to express their own opinions, those who know the person well, will have to consider their strengths and interests and make decisions for her or him. Because housing becomes an integral part of the vision and lifestyle plan, it is best to begin by asking the individual where he or she wants to live. If they have not had an opportunity to understand the differences in housing options, they may want to visit friends and families who live in different settings in the community.
Initially, the individual may not like the thought of leaving home. As with all children, moving out can be an exciting time, yet it can be a time of concern. Addressing the person’s joys and fears will be a necessary part of the process. Discussing fearful situations they might encounter being on his or her own can help to plan for social, safety, and economic concerns such as the ability to maintain the appropriate supports, separation from the family, vulnerability, social isolation, and the ability to be employed. It is important to examine what is making the individual fearful. Some fears may be realistic and others may not be. By networking with parents and friends, and actively seeking out information, some of these fears may be alleviated.
It is often difficult to find a place to live that is affordable, accessible, available, and where the person wants to live. Also, additional supports for young adults are often complicated and costly. Each individual is unique. There is no model for obtaining housing and support.
Individuals with disabilities now have a greater choice than ever in where they can live. However, eligibility requirements can be strict due to limited funding. The following factors can have an impact on their options:
- The individual’s resources — wages, trusts, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), county services, Medical Assistance, Home and Community-based waivers
- The family’s resources — financial commitment, time, energy, and networks
- Community resource options — availability of suitable housing, community development, accessible housing, low-income or Section 8 housing
- State resources — financial support, state housing agency and planners, state disability resources
Many new changes in the way a person with a disability can access housing and services have emerged and are being developed. See Kokua Network's Residential Options Bootcamp here.
Once parents and their son or daughter with a disability have determined the most desirable and appropriate housing situation, the next step is to explore how much can be spent on housing. Creating a list of expenses is crucial. It is essential to look at possible income, Medicaid, SSI, SSDI, work income, and family contributions. There are no simple answers when it comes to obtaining payment for housing. Eligibility criteria for the individual’s specific disability will become a determining factor for most funding.
Much is involved when planning housing for an individual with disabilities. It is important to plan early and plan ahead so that options don’t become limited and affect the long-term vision. Limited funding, availability of supports, services, and affordable housing will also have an affect on options.
A Parent’s Role in a CSE or IEP Meeting
As a parent, you play a vital role in your child's education. If you are a parent of a child with special needs, then one of the most important roles you play is as a member of the Committee of Special Education (CSE) or the committee that generates an Individualized Education Plan (IEP) each year. Prior to attending your first CSE/IEP meeting, someone from the school should explain to you your participation in the meeting and your rights as a parent. If this wasn't done, or you want a quick review, the following provides an outline of your role in a CSE/IEP meeting.
- Establish a rapport with staff prior to the CSE/IEP meeting. In most cases, the school district has the same desire as you do regarding your child. Everyone wants to see your child in an appropriate program, working towards meaningful goals, receiving any necessary related services (i.e. speech, OT, PT), and having positive interactions with the general population. By making the effort to know your child's teachers, aide and related service providers throughout the school year, it will take away some of the stress when you attend the CSE/IEP meeting. It also helps to take chocolate chip cookies which will boost everyone's mood!
- As a parent, you have the right to participate in the CSE/IEP meeting. Since the CSE/IEP meeting is in regards to your child, you have the right to attend the meeting. In fact, the school should make every effort to have you attend. Many states require that the meeting be held at a time that is mutual for both the parent and the school district. If an effort has been made to change a meeting date or time and it still isn’t possible for you to physically attend, you can request to attend by conference phone. This will enable you to still participate, voice your concerns and contribute to the discussion of setting goals and objectives.
- Mandated members are to be present at the CSE/IEP meeting. There is a list of mandated members that must be present at a CSE/IEP meeting, such as an administrator knowledgeable about special education, school psychologist, special education teacher, and general education teacher. If the chairperson of the CSE/IEP knows in advance that a mandated member cannot attend, you should be notified and given the opportunity to reschedule the meeting. If you are comfortable with having the meeting with partial members, that is your choice.
- Goals and objectives presented at the meeting are not cut in stone. Because there is so much information that needs to be discussed and decided upon at a CSE/IEP meeting, special education teachers and related service providers will often bring suggested goals and objectives with them to the meeting. This sometimes can feel a little intimidating to a parent. However, keep in mind that these are to be discussed, revised and agreed upon. If you feel that a goal isn't appropriate for your child and can explain why, then the committee needs to take your concern in consideration.
- You are entitled to bring an advocate with you. Some states require that the CSE/IEP have a "parent" member, another parent of a special needs child. The role of this team member is to listen to all of the information being presented, ask questions that might help you as the parent, and to give input on your child's program. If this is not mandated for your state, you're still entitled to bring an advocate with you. Your advocate might be another parent, someone who helps care for your child outside of school, or someone knowledgeable in the area of your child's disability. An advocate will ask for clarification regarding the information presented at the meeting and will often go to bat for you if you feel your child has a particular need that the committee isn't addressing.
- Request to visit a program before your child is placed in it. In some cases, the general education setting is not the most appropriate setting for a child with special needs. Ideally, if the CSE/IEP is going to recommend a different program, or possibly a different school, information should be provided to you in advance. You have a right to request to visit the program and meet the staff. If possible this should be done prior to your child's meeting so that a final decision can be made at the meeting.
Although certain components of your role as a member of the CSE/IEP vary from state-to-state, the ones mentioned above are common to most states. Lastly, thank the committee for their investment in your child's education. Just as you pour your heart into being a good parent, your child's teachers and related service providers care a lot about your child. A simple thank you can go a long way. But we'd like to know, how was your experience with your most recent CSE/IEP meeting?