The Autism category compiles any blog related to Autism on the North Shore Pediatric Therapy website.  The blogs in this category are meant to help educate, inform and encourage parents of children with Autism. Readers will learn about Applied Behavior Analysis, Autism-friendly activities, school, appropriate toys, red flags, special needs lawyers, financial planning, multidisciplinary treatment options and more. If you are looking for any information related to Autism, this category will help you get started. If you need additional assistance, please give us a call at (877) 486-4140.

Blog-IEP-Rights-FeaturedImage

IEP Legal Rights

This guest blog was written by Sandra Strassman-Alperstein.

As a special education attorney, I am often asked by parents of children with autism about their children’s legal rights at school. Fundamentally, children with autism are entitled to the same Blog-IEP Rights-Main-Landscapeeducational rights as other children with disabilities, namely FAPE (free appropriate public education).  What constitutes “appropriate” education is at the crux of many special education disputes regarding students with autism as well as other students with disabilities.

Let’s take Michael, a boy with autism severe  on the spectrum. Michael is 10 years old. He is not yet toilet trained. Michael demonstrates unsafe behaviors at school, such as self-injury, violence toward peers and staff, and elopement (running). Michael is rapidly becoming a danger to himself and others at school.

At Michael’s IEP meeting, the district recommends Michael’s current self-contained life skills classroom with a student/teacher ratio of 6:1. While many of the goals appear to be appropriate, Michael has made no progress this year. But we know Michael can learn in a 1:1 setting because he has made good progress with a private tutor at home. Also, the proposed IEP contains no goal for toileting skills, which are critical life skills, and no behavior intervention plan (BIP) to keep Michael and others safe when he displays unsafe behaviors.

What types of questions should Michael’s parents be asking at the IEP meeting? I’d suggest questions designed to elicit how the team proposes to educate Michael safely and appropriately, and how the proposed IEP is designed to accomplish this.

Let’s start with Michael’s present levels of performance in the IEP. Are they based on current data, and are they accurate reflections of Michael’s current abilities? How about his goals: do they address all areas of deficit? (For instance, the proposed IEP does not address Michael’s lack of toileting skills and unsafe behaviors – goals will need to be added to cover these areas.) Are the proposed goals reasonable given Michael’s present levels of performance? Are they SMART goals? (SMART goals, according to Pete Wright, are goals which are specific, measurable, use action words, are realistic and relevant, and are time-limited. (See http://www.wrightslaw.com/info/iep.goals.plan.htm#sthash.HUUaBQ3V.dpuf.) What about the proposed services – are they sufficient to allow Michael to achieve his IEP goals?

Now let’s examine Michael’s proposed placement (the 6:1 life skills classroom). Is this classroom appropriate for Michael, or does he need a smaller class setting with more adult supervision and structure? Michael clearly needs a BIP – can an appropriate plan be implemented in the proposed placement, or should the team be recommending a therapeutic day setting or even a residential placement for Michael?

Now take the case of Michelle, a 10 year old girl with what used to be called Asperger’s Syndrome (AS), a form of high-functioning autism (AS was eliminated as a separate diagnosis in the DSM-V that was recently released; however, it remains a useful descriptive term). Michelle can read and write, her grades are good, and she does not display unsafe behaviors in school. However, Michelle demonstrates social skills deficits that impact her in school: she sits alone at lunch, does not seek out friends or engage in reciprocal conversations, and often misreads social cues, causing conflicts with both peers and staff. Other students are starting to tease her and call her “weird.” This causes Michelle to withdraw socially, and sometimes to shut down and refuse to do her work in class. Michelle is beginning to develop a negative self-image, as she has been observed to say “I am dumb” or “I am weird” at least several times a day in school.

Because Michelle – like Michael – has autism, the team proposes the same self-contained life skills 6:1 classroom. However, it should be clear that while both children have autism, their needs are nothing alike.

Both Michael and Michelle have the right to be educated in the LRE (least restrictive environment). However, what that will look like is very different for each of these children. For Michael, it is very possible (even likely) that the self-contained public school classroom will not be restrictive enough; for Michelle, it is likely to be too restrictive. (The LRE is the setting in which the student has maximum access to typical peers, but in which the child can be appropriately educated. Thus, what constitutes the LRE will vary from child to child.)

So in Michelle’s case, the parents should be asking similar questions regarding present levels (are they accurate?), goals (do they cover all areas of deficit – such as social/emotional needs – and are they SMART goals?), services (are they sufficient to enable Michelle to meet her goals?), and placement (is the self-contained classroom the LRE for Michelle when she is able to progress in the general education setting?).

What these examples demonstrate is that different children have different needs, regardless of an autism diagnosis/label. The fact is, as the saying goes, if you’ve met one kid with autism, you’ve met one kid with autism.

For each child, parents should critically examine the key elements of the proposed IEP, namely:

  1. Present levels of performance (are they based on data and do they accurately reflect the child’s current performance?);
  2. Goals (are they SMART goals that address all areas of deficit?);
  3. Services (are they sufficient and tailored to meet the child’s unique needs to enable the child to progress toward the goals?)
  4. Placement (is it the LRE?)

Parents are their children’s best advocates. They are the experts on their child and have much to contribute to the IEP team. Hopefully this information will help parents fulfill their critical roles in their children’s education.

Sandra Strassman-Alperstein holds a B.A. in English from the University of Florida and a J.D. from the University of Chicago Law School (cum laude 1990). More importantly, Sandy is the mom of four wonderful kids, three of whom have received special education services in the public school setting via IEPs and 504s. Sandy has been practicing special education law & advocacy for the past 15 years and is an active volunteer on the national, state, and local levels. Sandy’s website is http://www.spedlaw4kids.com.

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140!

New Call-to-Action

Blog-Picture-Exchange-Communication-System-FeaturedImage

Common Misconceptions About Picture Exchange Communication System

What is a Picture Exchange Communication System (PECS)? PECS is a form of Augmentative and Alternative Communication (AAC) which uses a picture/symbol system to teach initiation ofBlog-Picture Exchange Communication System-Main-Landscape
functional communication. PECS was developed by Lori Frost and Andy Bondy in 1985 to be used with preschool children on the autism spectrum who demonstrated little to no socially-related communication. Examples include: children who avoided interactions with others, did not approach others to communicate, and/or only communicated when prompted to do so.

Myth #1: The Picture Exchange Communication System is strictly used for nonverbal children or children on the autism spectrum.

A common misconception about the Picture Exchange Communication System (PECS) is that it is strictly used with nonverbal children. While PECS and other forms of AAC have proven very useful and successful with nonverbal children, the system services many other populations with the purpose of eliciting and initiating functional communication.

To fully understand the meaning of functional communication, a distinction must be made between actions directed to the environment vs. actions directed toward a person. A child may climb on a step stool to reach a toy car on a shelf. From this action, we could infer that the child wants to play with the car. However, this is not communicative. If this same child looks from the car to his mother, or leads his mother over to the car, this is considered communication. Neither interaction involved speaking, however the distinction is that communication occurs when an action is directed towards someone else to achieve a certain outcome.

Therefore, Picture Exchange Communication System is appropriate, not just with children or adults that are not verbally communicating, but with those who are verbal, yet lack person-directed communication.

Other populations where PECS might be appropriate (to name a few):

-late-talking children (research is showing benefits for the introduction of AAC as early as 12 months)

-adults with aphasia

-Childhood Apraxia of Speech (CAS)

-children with reduced speech intelligibility

-verbal children with reduced social language and initiating

Myth #2: Using PECS will deter my child from communicating verbally

For some children, verbal communication can be a challenge; speech and language are not developing as quickly as would be anticipated and, accordingly, result in accompanying frustration and associated behaviors. Introduction of an augmentative and alternative communication system like PECS can help bridge the gap for children who are not yet verbally communicating but need an accessible means of communication as speech and language develop. Without an effective means of communication, these children are at risk for social, emotional, and behavior problems, including feelings of frustration and isolation.

Often, parents are concerned that using an augmentative or alternative form of communication will replace or deter verbal communication. In fact, research has shown just the opposite:

“Research over the past 25 years has shown not only that use of augmentative communication systems (aided or unaided) does not inhibit speech development but that use of these systems enhances the likelihood of the development or improvement of speech.” (Bondy & Frost, 2004)

The PECS program mirrors the acquisition of typical language development; children are taught one-word labels for frequently requested items before transitioning to formulation of two-word utterances. Verbally requesting and labeling can be targeted in conjunction with the program. The PECS program also details modality transitioning (i.e., transitioning from PECS to verbal communication), if and when it is appropriate.

If your child is using PECS now, this does not mean that you are “giving up on speech”. It is a system that is being utilized to give your child a means of communicating and interacting with others while speech is developing.

Myth #3: PECS cannot be used with children who have visual impairments, fine motor, or gross motor difficulties.

PECS can be used with a wide range of age-groups and disabilities. Accommodations can be made for children and adults with visual impairments, fine motor, or gross motor difficulties, to name a few.

Pictures can be made in various sizes to accommodate visual impairments. Additionally, you or your child’s speech language pathologist can select and modify pictures to suit your child’s needs; photographs can be used instead of clipart or Boardmaker pictures, and images can be modified to create more contrast.

Pictures can also be put on objects (e.g., bottle tops) to make them easier to grasp and pick up from a table or book for children with fine motor difficulties.

Step 2 of PECS involves ‘distance and persistence’, meaning a child is taught to move across a room, multiple rooms, etc. to select a picture from his book and persist when giving it to his communication partner. Students that are non-ambulatory can use a voice switch or a button to request his communication partner in order to perform the exchange.

If you have questions about PECS and if it would be appropriate for your child, please consult with a licensed speech language pathologist.

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140!

Meet-With-A-Speech-Pathologist

Blog-ABA-Search-FeaturedImage

How to Choose the Best ABA Provider for Your Child

Beginning ABA therapy services can be overwhelming and confusing. Below are a few things to consider when choosing an ABA provider to ensure you are finding the best fit for you and your child! Blog-ABA-Search-Main-Landscape

Scope of Practice

  • This is a term that simply means that healthcare professionals should ethically only treat populations and use procedures/processes in which they have specific education and training.
  • For example, if a BCBA has only worked with the pediatric population, it would be outside their scope of practice to treat adults.
  • Especially for children with intense behaviors, children who are older in age, larger in stature, etc., it is important to ask if the ABA therapy practice has BCBAs who have experience treating in these areas to ensure safety and maximum progress.

Location of Services

  • Some ABA therapy companies only offer in-home or in-clinic services exclusively. Other places, like NSPT, offer ABA services in homes, clinics, schools, etc.
  • It is important to consider where your child might need support and choose an ABA company that is able to offer services where therapy will be most appropriate, beneficial, and consistent.

Insurance Coverage

  • ABA therapy is recommended 10-40 hours per week, based on BCBA recommendations. This range of hours is what has been proven to be most effective for progress.
  • Because of the large number of hours, therapy can be very costly if paid for out of pocket.
  • When calling ABA therapy providers, be sure to let them know which insurance you have (at NSPT we will check benefits and provide a summary explanation as a courtesy to all of our families). Families are then able to determine if it is going to be financially feasible to begin services with the provider.

ABA therapy requires consistent communication and collaboration between provider and family, so above all, it is vital you find a provider who you are comfortable talking, sharing, and brainstorming with!

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140!

Meet-With-An-Applied-Behavior-Analyst

Blog-Divorce-FeaturedImage

Divorce When There is a Child with Special Needs

This guest post is from Benjamin Rubin.

When parents of a child with special needs get divorced there are many additional complications beyond a traditional divorce involving children. First and foremost, child support must be very Blog-Divorce-Main-Landscapecarefully considered to ensure that there is no loss of benefits. Child support payments that are required to be paid by a parent in accordance with Illinois state law by Court order, may result in a reduction or the complete elimination of a child’s SSI (Supplemental Security Income) benefit as well as the child’s Medicaid, which provides the child’s medical coverage, therapy, employment support, and home or residential support services (such as group homes) needed for the appropriate support for that child with special needs, and the custodial parent. For a child age 18 or older one hundred percent (100%) minus $20.00 of the child support payments ordered by Court, count as a reduction against SSI.

Government benefits can be protected, however, if the court order directs that child support payments are to be made to a “special version” of a Special Needs Trust for the sole benefit of that child, known as a self-settled special needs trust (also known as a 1st party, “pay-back,” OBRA, d4A, or d4C special needs trust). It’s important to note that this is different than the type of special needs trust most commonly established by parents for gifts and inheritances which is often called a 3rd party special needs trust.

Support payments to a 1st party special needs trust do not displace SSI, nor jeopardize Medicaid and Medicaid Waiver programs (such as group homes and day programs), greatly benefitting both parents and the child. It should be noted that for smaller child support payments (if total child support ordered is currently less than $14,000 per year) an ABLE account may be used. For more information about ABLE accounts please see ABLE article.

Again, for a child age 18 or older, one hundred percent (100%) minus $20.00 of the child support payment counts as a reduction against SSI; unless the court order provides that such support be paid irrevocably to an appropriate special needs trust or to an ABLE account in some cases (see above).

There are other considerations that have particular importance in the context of a child with special needs which should be discussed. First, health insurance coverage can be crucial. In Illinois it can be maintained by the parents of a child with special needs, in most cases, until the parents retire. Second, life insurance proceeds may be ordered by the court to be paid to a special needs trust, however, under current POMS (Social Security’s rules) and Medicaid regulations it does not need to go to a 1st party special needs trust as is the case with child support. It is highly recommended that a special needs planning attorney be consulted on all of these matters.

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon. If you have questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140 and speak to one of our Family Child Advocates!

New Call-to-Action

Benjamin (Benji) Rubin’s older brother Mitchell has Autism and lives in a Clearbrook CILA. Benji graduated from the University of Illinois College of Law, Magna Cum Laude, received his undergraduate degree from Northwestern University, and currently is pursuing his Graduate Law Degree, an LLM (Tax), at Northwestern University. Benji, a partner in the law firm, joined the practice in 2010. Benji is a member of the Academy of Special Needs Planners, a member of the Special Needs Alliance, is Vice Chairman of the American Bar Association Special Needs Planning Committee, serves as the President of SIBS (Supporting Illinois Brothers and Sisters), the Illinois chapter of the national Sibling Leadership Network, is a member of the Board of Directors of The Arc of Illinois, is a member of the Clearbrook Associate Board, and serves on the Advisory Council of Encompass(Encompass in partnership with Jewish Child & Family Services, Jewish United Fund, JVS Chicago, JCC Chicago, Keshet, and The Center for Enriched Living and Center for Independent Futures, seeks to provide adults with I/DD a full array of financially sustainable, community-based services and supports), and is a member of the Board of Directors of the SEDOL (Special Education District of Lake County) Foundation. Benji is also a Faculty Member for the Illinois Institute for Continuing Legal Education (IICLE). Having Mitchell as a brother profoundly shaped who Benji is today, and thus the type of law he chose to practice. His personal experiences as a sibling offer a unique perspective into the responsibilities that come with caring for a sibling with special needs. Now, as an adult, those sometimes present and future responsibilities he will have regarding his brother’s care are a concern that he shares with all brothers and sisters of individuals with special needs.

Blog-Autism-and-Speech-FeaturedImage

What Can a Child with Autism Expect in Speech Therapy?

If you are a parent or a professional who has had experience with a child diagnosed with autism, you know that they are all as different as the colors under the sun. Speech therapy services areBlog-Autism-and-Speech Therapy-Main-Landscape typically recommended and necessary for kids diagnosed with autism, as they may have difficulty communicating effectively. These services will be tailored to the individual to ensure the child is making progress and achieving developmental milestones. No two speech therapy sessions are the same, as will be the case for your child. However, there are overarching goals that you can expect your child to be working towards.

Here are factors you should expect to be consistent for a child diagnosed with autism that is receiving speech therapy services:

  1. Speech therapy will be individualized.

The speech language pathologist will complete an evaluation of the child’s current speech and language skills. Based on the results of the evaluation and any observations made, goals will be formulated to target areas to improve.

  1. Speech therapy will target functional communication.

This may mean different things depending on the level of the child. Whether the child is verbal or nonverbal, therapy will address making sure the child is effectively communicating their needs and wants. If the child is nonverbal or has significant difficulty utilizing verbal language, Augmentative and Alternative Communication (e.g., pictures, sign language, iPad, etc.) may be implemented. Therapy may also target talking about events, telling stories, answering questions, asking questions, commenting, expressing opinions, and participating in conversations.

  1. Speech therapy will target social language.

Social language is also known as pragmatic language and includes using language for a variety of purposes (i.e., greetings, informing, demanding, etc.), changing language according to the needs of the listener or situation, and following rules for conversation and storytelling. In order to warrant a diagnosis of autism, the child has already been determined to have a deficit in social communication and interaction. Treatment goals may include maintaining eye contact, initiating and terminating conversations, maintaining topics of conversation, identifying emotions, and utilizing appropriate body language.

The above goals are targeted in a variety of ways, again dependent on your child. Sometimes direct education is provided prior to practicing skills in activities, role-play scenarios, or structured real-life situations. Other times, skills are targeted during play and motivating activities for the child. No matter the skill level of your child with autism, speech therapy is an integral piece to their progress and successful functioning.

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140.

Meet-With-A-Speech-Pathologist

Blog-Traveling-with-Autism-FeaturedImage

Traveling With a Child Who Has Autism

The word “travel” can bring a sense of excitement and joy, because you are going on a vacation or to visit relatives or to explore something new. However, the word “travel” can also bring feelings of anxiety or stress. Blog-Traveling-with-Autism-Main-Landscape

Traveling with a child with autism spectrum disorder (ASD) can seem overwhelming, especially when it comes to flying.

Here are some tips that can help a family prepare for flying with a child on the autism spectrum:

  1. Call the airport prior to your travel date and see if you can schedule a “trial run” to acclimate your child to the surroundings. During one of my therapy sessions I took a child to O’Hare with his parents to prepare for the many transitions involved in navigating an airport. We were able to start from the beginning of pulling up to the parking lot, riding the train and walking up to the security desk. We took pictures of each step so the child had a schedule and felt comfortable the day of the flight. Many large airports have guides to assist families with special needs children through the airport experience. Call to find out how to set up a guide for your family on your travel day.
  2. Provide your child with a schedule of “what’s going to happen, once you are on the airplane.” Make your child aware of what boarding the airplane will look like, what your seat number will be, what waiting for the plane to take off is like, the pre-flight security guidelines, take off and what to do during the plane ride.
  3. Have your child help plan activities during the plane ride. Bring favorite toys and games to help keep your child occupied.
  4. Have your child watch videos and listen to sounds of the airplanes. This is especially important for those kiddos who are sensory avoiding. Prepare your child for all the sensations he or she may experience on the airplane including the noise, ears popping, the vibration of the plane, what the seats will look like, what standing and going to the bathroom may feel like, etc.
  5. Finally, prepare your child for what happens when the plane lands and collecting your luggage.

Talk to your therapists and ask them to participate in the planning process. Talking about the process a few sessions before the travel date can instill confidence and help eliminate fear. Call the airports that you are flying in and out of for any resources and help available for your family.

Lastly, enjoy the vacation!

Check out these valuable resources for popular vacation spots and how they accommodate families:

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140.

Find-Out-More-About-Autism

early autism

What Exactly is a Social Group for Children with Autism?

We interviewed Latha V. Soorya, PhD from the Rush University Medical Center to learn about the study of social skills groups for children with autism.

Many children with autism are working toward learning, building and strengthening their social skills. The Autism Assessment, Research, Treatment and Services Center (AARTS Center) at Rush University Medical Center has dedicated their mission to on-going research in hopes to find new interventions to help those with autism. Latha V. Soorya, PhD explains and answers some questions regarding their newest study on social skills and the use of Oxytocin. early autism

Oxytocin is a hormone that plays an important role in social bonding and connections. Social skills groups for children with autism are widely used and well-liked. The Autism Assessment, Research, Treatment, and Services Center at Rush is studying both of these treatments to better understand how to improve social connections in children with Autism Spectrum Disorder (ASD). We are looking for 8-11 year old children with ASD to participate in a unique study called ION: Integrated Oxytocin and NETT (Nonverbal synchrony, Emotion recognition, and Theory of mind Training).

What is the benefit for parents? Families will receive support from therapists and other parents during parent groups that run at the same time as the social skills groups. Qualifying families will receive evaluations and treatment from licensed psychologists, child-psychiatrists, and therapists at no-cost as part of their participation in the social skills research study. The AARTS Center has run the social thinking group in the past, and a parent shared their positive feedback with us, saying, “We liked connecting with other parents during parent group and still use the materials from group to help our son focus on other people’s thoughts and feelings.”

How can parents & clinicians use the results? Before the study is published, families will receive results from their child’s evaluations as well as information about their progress. After publication, the AARTS center will share results with participating families, community partners, and the academic/medical community. Our hope is that the ION study will target social skills development in a new way, and that parents and clinicians will see lasting changes in the way that children with ASD apply these skills across settings.

Has similar research been done in the field? This is a unique study that combines promising research from two fields. Intranasal oxytocin may increase attention to social cues (e.g. where someone is looking) and social skills groups are well-liked and may help improve some aspects of social behavior. However, research also shows that changes from social skills groups, as well as intranasal oxytocin, do not last very long. This study is the first to examine what happens when the two treatments are combined.

What are you most excited about exploring in this study? We are most excited about this study’s potential to develop a more powerful, longer-lasting treatment for critical social thinking skills—skills we know are critical to navigating many life experiences and building social relationships.

Latha V. Soorya, PhD, is a clinical psychologist, board-certified behavior analyst and assistant professor of psychiatry at Rush University Medical Center. Soorya serves as the research director at the AARTS Center at Rush and brings expertise in diagnosis and intervention development to the research program.

For more information on the study, please contact Anthony Burns at 312-942-6331 or email Anthony_burns@rush.edu.

Blog-Self-Care-Skills-FeaturedImage

Occupational Therapy’s Role in Improving Self-Care Performance in Children

The role of the occupational therapist, when working with clients of any age, is to support participation and daily functioning. For a child, one of the primary occupations is self-care. Self-care Blog-Self-Care-Skills-Main-Landscapeskills, which include feeding, toileting, dressing, bathing and grooming, are classified as Activities of Daily Living (ADL’s), because they are a critical part of a child’s overall health and participation each and every day. In order to participate in self-care, a child must have component skills within a variety of performance areas, and delays in any of these areas can make seemingly simple tasks feel nearly impossible.

During an initial evaluation, an occupational therapist will help you determine which performance deficits or barriers within the child’s environment are causing your child to struggle with self-care. The OT will first obtain information by asking you questions about your home setup, your family’s routines, what kind of assistance your child currently needs to perform age-appropriate self-care skills, and what your goals are in terms of self-care independence.

These questions will help the therapist obtain a snapshot of your child’s current self-care performance and provide more information about the home environment in which your child is performing. The therapist will also complete a comprehensive evaluation of your child’s underlying skills through clinical observation and standardized testing to determine potential causes of delayed self-care skills.

Below are a variety of performance areas an occupational therapist will assess that could contribute to self-care performance:

  • Motor performance: A child’s physical ability to perform the motor tasks required for a self-care skill is dependent on his or her strength and endurance, range of motion, body awareness, grasp, manual dexterity, and bilateral coordination. In addition, a child may have decreased motor planning, or difficulty generating an idea for and executing a specific movement pattern.
    • Example: A child may be unable to tie his shoes because he cannot maintain a pincer grasp on the shoelaces.
  • Executive Functioning and Attention: A child may have difficulty sustaining attention to a self-care task, sequencing the steps of a task in an efficient order, or remembering when and how to do the task at all.
    • Example: A child may not be able to remember or mix up the order of steps to tying shoes.
  • Sensory Modulation: A child may have decreased sensory modulation, or ability to filter out irrelevant sensory stimuli. Children with poor sensory modulation may be hypersensitive to input, which can often make children very uncomfortable in their own skin, easily distractible, or easily upset and overwhelmed. Other children may be hyposensitive and not notice certain important sensory input. You can read more about how sensory processing impacts self-care and hygiene in one of our other blogs, “Horrible Haircuts and Terrible Toothpaste” http://nspt4kids.com/occupational-therapy/horrible-haircuts-and-terrible-toothpaste-helping-your-child-with-sensory-processing-disorder-tolerate-hygiene/
    • Example: A hypersensitive child may be bothered by the feeling of their socks and refuse to wear tie shoes; a hyposensitive child may not notice that his shoes feel or look funny when on the wrong feet.

Once the evaluation is complete, the occupational therapist will be able to determine if the child would benefit from ongoing occupational therapy. Future treatment would focus not only practicing specific self-care skills, but also engaging in activities that facilitate the overall development of underlying motor, sensory integration, and executive functioning abilities. In addition, the therapist will work with you to adapt your child’s environment through the use of home modifications, visual supports, and adaptive equipment to support performance. Through all of these modalities, the occupational therapist will be able to increase your child’s participation in self-care activities, thereby increasing his or her independence and overall development.

Check out one of our previous blogs on self-care written by a Board Certified Behavior Analyst: Self-Care Skills for Children with Autism

NSPT offers services in Bucktown, Evanston, Deerfield, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Mequon! If you have any questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140.

Meet-With-An-Occupational-Therapist

Blog-Special-Needs-Lawyer-FeaturedImage

How Do I Find a Special Needs Planning Lawyer?

This guest post is from Benjamin Rubin.

Let me begin by asking you a question. If you needed heart surgery, would you go to a general practitioner or an internist? Of course you would not entrust your heart surgery to anyone but an Blog-Special-Needs-Lawyer-Main-Landscapeexperienced heart surgeon. Likewise, when you need special needs planning, you shouldn’t be considering a general practitioner, or even a general estate planning attorney.

So, what is special needs planning?

The attorney should be experienced not only in drafting the two kinds of Special Needs Trusts, but also be experienced dealing with the Social Security Administration and the state when they review the trusts upon application for SSI and Medicaid, or upon redeterminations. The attorney should also be familiar with guardianship and the alternatives to guardianship, as well as how to navigate successfully the state’s children and adult services system for individuals with special needs including intellectual and/or developmental disabilities, mental illness, or those with significant physical disabilities. We often refer to it as the Illinois “maze” for services.

In addition, you want an attorney who will know, and advise you promptly, when new laws, rules, or procedures occur that impact your planning. You want to find an attorney or firm that can assist you, with compassion and understanding. Many special needs planning attorneys are themselves parents or siblings of individuals with special needs and “get it.”

I suggest that the first place to visit is www.specialneedsalliance.org, The Special Needs Alliance (SNA) is a national, not-for-profit, association of experienced special needs planning attorneys, a majority of whom are fellow parents or siblings. Membership is by invitation. I was honored last year to be invited as one of the youngest members to ever be invited to join the SNA and my father is honored to serve as President-Elect of that national organization. In fact, three of the four attorneys in our office are invited SNA Member Attorneys, and the fourth is an Affiliate SNA Member attorney.

Another source is www.specialneedsplanners.com. The Academy of Special Needs Planners (ASNP), a national group, is owned by three attorneys and is open to all attorneys, regardless of experience. My father was a charter member of that group and I remain a member of this group. There are many excellent special needs planning attorneys that are members of ASNP.

However, if you are considering an attorney who is not a member of Special Needs Alliance, I suggest you ask some questions such as:

  1. How many “third party special needs trusts” have you prepared in the past month? Six months?
  2. How many “first party special needs trusts” have you prepared in the past month? Six months?
  3. If the Social Security Administration or the State of Illinois has questions about the trust(s) you drafted, will you “handle” those questions without any additional cost/fees?
  4. How many adult guardianships have you handled and powers of attorney have you drafted for individuals with special needs in the past year?
  5. What other areas of practice does that attorney handle (check his or her web site)? That is, are they also doing business law, traffic, divorce, bankruptcy, personal injury, etc.? If they are practicing in other areas of law, then they will not be able to adequately stay current with the constant changes that take place in the area of special needs planning.

Finally, you are not just looking for someone to draft a document, but you are looking for a relationship with a firm that will be going down that road to peace of mind with you for many years.

NSPT offers services in Bucktown, Evanston, Highland Park, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Milwaukee. If you have questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140 and speak to one of our Family Child Advocates!

New Call-to-Action
bnrbarmjrBenjamin Rubin limits his law practice, as does the firm of Rubin Law, to Special Needs Legal and Future Planning for his fellow families of individuals with special needs. Benji serves as Vice-Chair of the American Bar Association’s Special Needs Planning Committee, is a member of both the Academy of Special Needs Planners and, by invitation, the Special Needs Alliance, the national not-for-profit association of special needs planning attorneys, is President of SIBS (Supporting Illinois Brothers and Sisters), the Illinois chapter of the national Sibling Leadership Network, which is an organization of adult siblings of individuals with intellectual disabilities, developmental Disabilities, mental illness, among other special needs, is a member of the Board of Directors of The Arc of Illinois, is a member of the Clearbrook Associate Board (Clearbrook is an agency serving over 7,000 children and adults with intellectual and developmental disabilities, one of whom is Benji’s brother Mitchell), is a member of the SEDOL (Special Education District of Lake County) Foundation Board of Directors, and serves on the Advisory Council of Encompass a joint venture that in partnership with Jewish Child & Family Services, Jewish United Fund, JVS Chicago, JCC Chicago, Keshet, and The Center for Enriched Living and Center for Independent Futures, seeks to provide adults with I/DD a full array of financially sustainable, community-based services and supports.Having Mitchell as a brother profoundly shaped who Benji is today, and thus the type of law he chose to practice. His personal experiences as a sibling offer a unique perspective into the responsibilities that come with caring for a sibling with special needs. Now, as an adult, those sometimes present and future responsibilities he will share with his older sister regarding his brother’s care, are a concern that he shares with all brothers and sisters of individuals with special needs.

blog-legal-and-financial-featuredimage

How to Make Financial and Legal Decisions for My Child with Special Needs

This guest post is from Benjamin Rubin.

Estate planning for parents of a child with special needs is, regretfully, a very complex process. In order to provide for a “special needs” child’s financial security to assure that he or she remains blog-legal-and-financial-main-landscapequalified or able to qualify in the future for government benefits such as S.S.I. and Medicaid, and to protect any inheritance or gift from claims of the government for reimbursement for benefits provided to him or her prior to our death or receipt of the gift, parents must properly plan now. More importantly, we must plan differently than other parents who do not have a child with special needs.

The facts are that in Illinois, as is the case in most states, without proper wills and trusts, a child with special needs may inherit property or receive gifts only to be then disqualified from receiving government benefits. Additionally, without proper planning and drafting of estate plan documents, the government may claim reimbursement from the child’s inheritance or gift for benefits provided to the child prior to the parent’s death or receipt of such a gift. This result is true even with “traditional” family trusts with “spendthrift” provisions that many attorneys use for all parents. One of the primary objectives in estate planning for parents of a child with special needs is to assure that the child remains qualified and eligible for government entitlement programs, while protecting the family’s assets, and the child’s inheritance, from seizure by the government as “reimbursement.”

My parents, like nearly all parents of a child with special needs, do not want my brother to rely solely upon the government to provide the level of care that they, my sister and I desire for him. The good news is that there are viable alternatives. A special form of a trust has become the appropriate and preferred estate planning document for families such as mine. Illinois law provides that such a trust established for the benefit of an individual with special needs shall not be liable to pay or reimburse the State (and by current regulations, the Social Security Administration), or any public agency for benefits received. Illinois law also provides that property, goods and services purchased or owned by such a trust for and or used by or consumed by the beneficiary, are not to be considered assets of the beneficiary.

The second type of trust “option” is commonly referred to as an OBRA or “pay-back” trust. This second form of a special needs trust is needed to preserve government benefits and still receive personal injury or medical malpractice settlements, inheritances left directly to a child with special needs, or assets already in his or her own name.

As family members we must become familiar with the laws concerning “guardianship of an adult disabled person.” Parents must also attempt to educate their “chosen” people who will act as Custodial Guardians and Trustees about the relevant laws, regulations, programs and entitlements affecting or benefiting their child with special needs, as well as about their “plans” and desires, including the estate plans.  Parents must consider the school district, “residential alternatives,” special recreation association, religious programs available to individuals with disabilities and vocational or workshop opportunities available in the vicinity of their chosen custodial guardians.

Parents must also convince grandparents and other relatives that they are not doing their “special needs” grandchild or relative any favor by treating them the same as other beneficiaries in their own wills and trusts, but that they should leave the “inheritance” to the special needs trust that parents have created for such purpose.

There are many, many other topics that a family of a child with special needs may need to consider which we plan to cover in future blog topics, including:

  • When using the newly permitted ABLE Accounts might make sense and what states currently make them available to Illinois residents.
  • If the parents are divorced and child support is being paid to an adult child with special needs, how must the child support be paid to ensure benefits are protected and what other considerations such as life insurance and health insurance even after age 26 might need to be brought up in the marital settlement agreement?
  • If one or both of the parents has a public pension such as TRS, SURS, the Judges Retirement System Pension, police pension, fire department pension, and the US Military retirement pension, among others, many are permitted to be left as a continuing annuity to a special needs trust for the benefit of an adult child with special needs for their entire lifetime so long as there are certain, sometimes very specific, provisions in the trust.
  • What if the parents need skilled nursing care and are worried they will spend all of their assets and have nothing left to leave to their child’s special needs trust? How can the special needs trust be drafted to allow the parents to use their child’s trust to qualify themselves for Medicaid to pay for their own skilled nursing care?
  • What should be in a “letter of intent” document to educate the “future team?”

NSPT offers services in Bucktown, Evanston, Highland Park, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Milwaukee. If you have questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140 and speak to one of our Family Child Advocates!

New Call-to-Action
bnrbarmjrBenjamin Rubin limits his law practice, as does the firm of Rubin Law, to Special Needs Legal and Future Planning for his fellow families of individuals with special needs. Benji serves as Vice-Chair of the American Bar Association’s Special Needs Planning Committee, is a member of both the Academy of Special Needs Planners and, by invitation, the Special Needs Alliance, the national not-for-profit association of special needs planning attorneys, is President of SIBS (Supporting Illinois Brothers and Sisters), the Illinois chapter of the national Sibling Leadership Network, which is an organization of adult siblings of individuals with intellectual disabilities, developmental Disabilities, mental illness, among other special needs, is a member of the Board of Directors of The Arc of Illinois, is a member of the Clearbrook Associate Board (Clearbrook is an agency serving over 7,000 children and adults with intellectual and developmental disabilities, one of whom is Benji’s brother Mitchell), is a member of the SEDOL (Special Education District of Lake County) Foundation Board of Directors, and serves on the Advisory Council of Encompass a joint venture that in partnership with Jewish Child & Family Services, Jewish United Fund, JVS Chicago, JCC Chicago, Keshet, and The Center for Enriched Living and Center for Independent Futures, seeks to provide adults with I/DD a full array of financially sustainable, community-based services and supports.

Having Mitchell as a brother profoundly shaped who Benji is today, and thus the type of law he chose to practice. His personal experiences as a sibling offer a unique perspective into the responsibilities that come with caring for a sibling with special needs. Now, as an adult, those sometimes present and future responsibilities he will share with his older sister regarding his brother’s care, are a concern that he shares with all brothers and sisters of individuals with special needs.