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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!

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Fostering Independence in Your Child

Picture this: your 6 year old carries his cereal bowl to the sink, leaving a trail of milk along the way. Your initial impulse might be to tell him to leave the bowl and let you take care of it. Blog-Independence-Main-Landscape

Picture this: your 11 year old daughter has just showered and washed her hair in less than 15 minutes and you highly suspect that either she didn’t use shampoo, or didn’t thoroughly wash herself, or both. You have the impulse to tell her to come over so you can check to see if her hair is thoroughly rinsed.

Finally, picture this: your 12 year old son is putting the finishing touches on his science fair project and you see that his poster is written in black ink with no additional color or pictures. You have the impulse to tell him that what his poster really needs is a pop of bold color to make it stand out.

What do these scenarios have in common? They are opportunities for our children to learn independence!

One of the toughest jobs of a parent is to allow a child to fall down, scrape a knee, lose a championship, receive a low grade, wear mismatched clothing, and tell a botched joke. Taking care of, preventing disappointment/messes/hurt feelings/embarrassment and a long list of other unpleasant experiences is part of the fabric of our parenting instincts, however, by doing these things we deny our children learning opportunities that they need as much as the shelter, food and love that we provide.

How do we foster independence? We accept the fact that childhood gets messy, uncomfortable, embarrassing, unpredictable and sad. We allow ourselves to feel the discomfort that we know our child may feel, and we tell ourselves that the feeling will pass and our child will be stronger and more resilient because of it. As we allow our child to pour his own milk, make her bed, select his outfit, style her hair and create that special Playdough, glitter and Styrofoam center piece, we promote problem solving, self-motivation, creativity and independence.

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!

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How to Bring Yoga Home

This guest blog was written by Erin Haddock.

Yoga was designed to keep the mind focused and relaxed. Of course, relaxing the body is much easier than relaxing the mind directly.  So we work on relaxing the body with yoga poses first, beforeBlog-Yoga-Main-Landscape relaxing through more subtle exercises. When you imagine an advanced yoga practitioner, you might have visions of someone doing a headstand or twisting into a pretzel. In fact, advancement in yoga has nothing to do with the body’s ability to move into poses. Advancement in yoga comes from the ability to maintain the mind’s focus on the present moment, which takes consistency, concentration, and patience. This applies to kids as well. I have seen kids so focused while practicing a simple pose, they are easily more advanced than adults who look around at their neighbors in class.

For this reason, practicing “off the mat” and “on the mat” go hand-in-hand and advance a yogi’s total development. We get precious few hours per week at our favorite yoga classes or in our home practice, but there are many hours each day when we face daily stressors. Creating a consistent “Relax Routine” at home can both deepen your family’s yoga practice on the mat, as well as reinforce yogic principles off the mat. The most useful tip I can give families working to reduce stress, is for the parents to practice too. Kids should get the message that yoga is something even adults enjoy and value as a tool to calm down when stressed.

Here are 3 easy yoga activities parents can incorporate in a family “Relax Routine.” All will promote a sense of well-being while practicing, lead to lowered stress levels after practicing, and will develop self-soothing tools that children can apply on their own.

  1. Mantra Repetition – This mindfulness exercise develops focus and calms the mind.  In our classes we use simple Sanskrit mantras, which mean peace, love and light. You can choose to repeat a Sanskrit mantra, the sound “om”, a relaxing word or phrase (i.e. “love”, “calm”, “home”, “I am peaceful”, etc.), or sing a relaxing song. Repeat the mantra for one or two minutes – or even longer, if you like. Your kids can join in or you can chant to them. Most kids love this practice, since it is similar to singing. This is an important part of yoga, as it is very effective at relaxing the mind. Chanting causes us to take slower, deeper breaths, which triggers the relaxation response. When the breath is relaxed, so is the mind. Kids can be encouraged to mentally repeat their mantra when under stress at home or in school.
  2. Breathing Exercise – Studies have found that regular practice of yogic breathing exercises improves efficiency and balance within the heart and lung system. These exercises teach practitioners what is commonly called “abdominal breathing”. Abdominal breathing has numerous benefits, including inducing the relaxation response, which calms, focuses and quiets the mind. Although we are born breathing like this, sometimes it can feel quite unnatural when first practicing these exercises. Many people are reverse-breathers – meaning their belly moves forward when they exhale, and backward when they inhale – which may cause them to experience more stress. To teach this technique, have your kids lie on their back and place a light weight on their belly (like a book, small bag of rice, etc.). Practice with them, as you breathe in through the nose slowly and deeply, allowing the belly to rise. Then, let the belly gently fall as you slowly breathe out through the nose. Practice for one or two minutes, depending on the age and attention span of your child. After practicing, remove the weight and notice how your breathing has changed. As you start to feel comfortable, you can practice this exercise without a weight. Just bring your attention to the belly as you practice abdominal breathing.
  3. Deep Relaxation – The culminating exercise in a yoga class is deep relaxation, or Yoga Nidra. Yoga Nidra has been found to produce effects similar to REM sleep, which promotes healing and deep rest.  Yogis say a final relaxation is a must, because it assimilates the benefits of the yoga practices within the body. You can find guided relaxations all over YouTube (we even have a few on our blog), but you can lead a guided relaxation yourself. Yoga Nidra can also be practiced separate from yoga, such as before bed or when your child is feeling stressed. Have everyone lie down and close their eyes. You may use blankets to keep warm or something like a scarf to cover your eyes, if desired. Tell everyone to stretch their toes wider and wider. Then tell them to slowly relax their toes. Instruct them to imagine the relaxation making its way up their body, part by part. You can mention a few key body parts they can relax (i.e. relax your legs, your belly, your eyes). A foot massage is a nice treat to add in while practicing this progressive relaxation. Finally, remain as silent and still as possible, relaxing for a few moments or up to five minutes. After this silence, ask your child to take a deep breath and stretch a little. Slowly make your way back to sitting and end with a final short message, like a mantra, poem, prayer, or simply say “thanks for relaxing with me.”

Developing a Relax Routine as a family can be incredibly rewarding for both kids and parents. Children appreciate the ability to see their parents relaxed and having fun, and parents are amazed at their kids’ focus and engagement.  Not to mention, it can be a powerful bonding experience. Aim to practice your “Relax Routine” at least twice a week. If you can practice once a day, even better!  It doesn’t have to take long. In fact, it is much better to be consistent about a short routine, than practice a long routine only once in awhile. Most importantly, make it work for your family. Yoga is supposed to feel good!

Erin Shanthi Haddock2Erin is E-RYT 200, RYT 500, RCYT with Yoga Alliance.  She completed her 200 hour teacher training with the creator of the Yoga for the Special Child® (YSC) method, Sonia Sumar and has taught the YSC method since 2010.  She is a certified Stress Management Specialist, and also holds certifications in Adaptive Yoga, the YSC method, and Yoga for Teens.

Erin is passionate about bringing yoga to people who experience barriers to their practice – including physical, intellectual, emotional, financial or geographical.  She pursues continuing education in Yoga Therapy at the Integral Yoga Institute in Buckingham, VA and is a member of the International Association of Yoga Therapists and Integral Yoga Teachers Association.

At Five Keys Yoga, we provide yoga classes and mindfulness resources just for kids! We are also the Chicago home of the Yoga for the Special Child® method, specializing in teaching yoga to kids with special needs. If you would like to learn more about the YSC method or how your child can deepen their yoga practice, please visit our website.

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!

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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.

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The Difference Between Positive and Negative Reinforcement

Trying to figure out different ways to approach behavior can be overwhelming and frustrating. One thing to always remember is to try and focus on reinforcing the behavior you want to see moreBlog-Reinforcement-Main-Landscape
than punishing the behavior you are wanting to decrease. Using positive and negative reinforcement can both help achieve the same goal of increasing the behavior you would like to see more of.

The difference between positive and negative reinforcement is simple. The use of positive reinforcement is adding something (typically something that is liked) to the environment after a behavior occurs that will increase the future instance of that behavior. The use of negative reinforcement is taking away something (typically something that is not liked) from the environment after a behavior occurs that will increase future instances of that behavior.

 Examples of positive reinforcement include:

  • Giving a praise after a specific appropriate behavior occurs and then that behavior continues to increase.
  • Earning a special treat after a specific appropriate behavior occurs and then that behavior continues to increase.
  • Getting a 5 minute 1:1 time with parent after a specific appropriate behavior occurs and then that behavior continues to increase.

Examples of negative reinforcement include:

  • Removing a chore from the chore list from the schedule after a specific appropriate behavior occurs and then that behavior continues to increase.
  • Taking away a specific school related task after appropriate behavior occurs and then that behavior continues to increase.

The key to making sure either type of reinforcement is working is to measure and track the behavior and see if that behavior is increasing over time!

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.

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Parenting vs. Technology: Helpful Strategies to Combat Electronic Overload

Chromebooks, iPads, Nooks, oh my! It would not be surprising if your child has access to more than one piece of technology in your home. With that said, the struggle to balance technology needs for school with the games and activities that take over your child’s night and weekends is real. BlogParents-vs-Technology-Main-Landscape

Although it may be frustrating to accept that technology is not going away, it’s important to recognize these moments as learning opportunities and a way to become a more creative parent.

Below are some helpful strategies to implement when combating technology:

Reward Responsibility – Create a system in which your child can earn ‘technology minutes’ for completing chores. Similarly to earning an allowance, this can be a great way to get your child more active in helping around the house.

Limit Bingeing Behaviors – Allowing your child to play on technology for multiple hours at a time on the weekend will likely make shorter episodes more difficult to transition out of. When your child has more time available, limit play to 30 minute or 1 hour increments, with other family activities in between.

Practice Transitions – Turning off the iPad, Xbox, or computer is a great opportunity to practice transitions. Provide your child with time warnings, clarify expectations, and work with your child to plan for the next opportunity to use electronics. Remotely turning off the family Wi-Fi can also be a helpful way for children to recognize that their time is up.

Become a Minecraft (or fill in the blank of which game your kiddo likes) expert! – Many of the games and activities your child plays can be a great way for you to spend quality time with your child in “their world.” Ask questions about the games. Read up on the latest news. Show interest and join in!

NSPT offers services in Bucktown, Evanston, 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.

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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!

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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.

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Separation Anxiety and School

It’s normal for children to sometimes feel worried or upset when separating from their main attachment figures. Although it can be difficult for parents and the child, it’s a normal stage of blog-separation-anxiety-main-landscapedevelopment.

Kids will often cry, whine, refuse to part or be overly clingy when it’s time to separate. Usually, these behaviors decrease with age, but sometimes, some kid’s reactions are extreme, and they interfere with their functioning in different areas of their lives. These kids may be suffering from Separation Anxiety Disorder. Kids who suffer from Separation Anxiety Disorder have a persistent fear of possible harm occurring to close attachment figures or excessive fear that they will leave and not return.

Some common behaviors related to separation anxiety include:

  • School refusal
  • Frequent somatic complaints (headaches, stomach aches, nausea)
  • Recurrent nightmares
  • Crying or having temper tantrums
  • Avoiding going to new places
  • Refusal to be alone

A common place where these behaviors occur is at school. For some kids, they might refuse to go to school, or they might have a hard time when being dropped off. No matter what type of anxiety the child is dealing with, it’s important to educate and teach your child about anxiety.

If your child is having anxiety about separating from you, here are some recommendations to consider:

  • Do not allow your child to stay home from school. This only worsens the symptoms over time and doesn’t allow them the opportunity to face their fear.
  • Do not ignore or deny the child’s worries. Teach your child about anxiety and its impacts.
  • Keep calm during separations. If your child sees you staying calm and cool, they are more likely to do so as well. When it’s time to say goodbye, make sure not to sneak out. This will only make the child more afraid.
  • Once your child makes it to school, identify a safe place for them if they are having a hard time. You can work with teachers or school counselors in identifying what would be appropriate.
  • Allow your child to pack a comfort item from school (favorite blanket or animal or a picture) that they can use when they feel homesick.
  • Create a goodbye ritual- maybe a special handshake or goodbye which can help the child feel more secure during the transition.
  • Praise your child’s efforts. Reward brave behaviors, however small they are!

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!

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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.

 

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An Open Letter to My Fellow Families of Children and Adults with Special Needs

This guest post is from Benjamin Rubin.

While all parents need to make legal and financial plans for the future, parents of children with special needs must plan for a much longer time period and must take into consideration many moreblog-special-needs-letter-main-portrait details, laws and government regulations. My brother, Mitch, now 35, has Autism, and resides in a Clearbrook Group Home or CILA (Community Integrated Living Arrangement).

My father, my law partner and founder of Rubin Law, has always talked about what he calls the “parent’s prayer” and I want to begin by quoting this prayer:

“We all wish, no pray, that our child with special needs will have a long, happy and enjoyable life, BUT we wish, we pray that we live at least one day longer than our child does, and that we will not have to place the “obligation” or “responsibility” upon others. We hope, we pray, that we will always “be there” for our child. However, as difficult as it is to think about our dying before our child with special needs, we must! We have that obligation to our child with special needs, to our other children, to our chosen guardians, and to ourselves.”

As a sibling, and president of the Illinois Chapter of the national Sibling Leadership Network, I share a common sense of future responsibility with my fellow siblings and while we may not talk about it, it is in the back of all of our minds. We ask ourselves, what will happen when my parents aren’t here anymore? Who will care for my sibling? The importance of our parents planning for our brother or sister with special needs is even more essential to us and our future reality than to our parents.

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.