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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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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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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!

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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.

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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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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!

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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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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!

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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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Who Will Take Care of our Special Needs Children When We’re Gone? Who Will Provide for Them Financially?

This guest post is from Howard N. Suss, MBA.

These are questions my wife, Zahava, and I talk about. Our son Shimmy is a spunky, lively, 15-year-old young man with both Down Syndrome and Autism. Shimmy is usually the life of the partyblog-financial-main-landscape and can make everyone in a room laugh, but also exhibits extreme behavioral issues (Thank you North Shore Pediatric Therapy, for helping us improve in that area).

About two years ago, our family (my wife and 6 kids) attended a special needs family retreat and my older kids had an “ah ha” moment when they attended a siblings presentation (this is a presentation that was given by a social worker, who herself has a 30-year-old brother with Down Syndrome). This presenter opened their eyes to the probable eventuality that one day THEY were going to have to take care of Shimmy. That wasn’t something a 20-year-old was expecting to hear.

My kids, generally, are very good with Shimmy and they work really well with him as far as providing for his needs and well being, as well as his safety. Long term, I’m not really concerned about that. What I am concerned about, and what I have been counseling clients about for over 20 years, is the financial burden that I don’t want placed on the kids when they have to step in, one day.

I have been practicing long term financial and estate planning, in general, and special needs planning in particular, for over 20 years. My company, The Suss Financial Group, is located in Skokie, Il. and we have an attorney in the office (I am not an attorney, we often work together).

My client’s number one objective is to structure a plan to provide long term income for their special needs “child” without jeopardizing government benefits, such as SSI. We work on setting aside money, on a consistent basis so that there is money for the future. This is a must for everyone, but especially for families in our situation. Things can change, but as it appears now, our Shimmy will probably not be able to earn a living and that’s why planning is so important.

There isn’t one financial solution for every family. I would recommend that you sit down with both a special needs planning attorney and a financial planner to discuss your specifics, but here are some ideas that work for clients who have family members with special needs:

  • Systematic savings for the individual with special needs either in the bank or brokerage account
  • Stocks, bonds or mutual funds
  • Private investments
  • Life insurance

Usually life insurance is the way to go, because you can provide a large sum for not a lot of money. The thought is, that the real need for funds results when mom and/or dad pass away and in most cases that’s not until much later in life. We will discuss this in more detail in a future blog.

Please remember that you really don’t want to title any assets in your kid’s name as it will affect his/her government benefits.

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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Howard N. Suss is a Registered Representative of Park Avenue Securities LLC (PAS). OSJ: 2550 Compass Road Suite H, Glenview, IL 60026. 847-564-0123 Securities products offered through PAS, member FINRA, SPIC. Financial Representative of The Guardian Life Insurance Company of America® (Guardian), New York, NY. PAS is an indirect, wholly-owned subsidiary of Guardian. The Suss Financial Group is not an affiliate or subsidiary of PAS or Guardian. 2016-28772 Exp. 9/16

howard-sussHoward N. Suss, MBD, has been practicing long term financial and estate planning , in general, and special needs planning in particular, for over 20 years. His company, The Suss Financial Group, is located in Skokie, Il. Howard resides in Chicago with his wife Zahava and 6 kids (one married and 2 in college) as well as 3 younger kids at home, including Shimmy, who has both Down Syndrome and Autism.

 

Howard can be reached at:

The Suss Financial Group
8170 McCormick Blvd., Suite 102
Skokie, IL. 60076
(847) 674 9470 ext. 1, office
(847) 674 9473 fax
www.sussfinancial.com

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A Letter I Would Have Written for My Parents When I Was Still Nonverbal

This guest post is from Kerry Magro, a 28-year-old adult with autism who has become a national speaker and best-selling author. Magro is also on the Panel of People on the Spectrum of Autism for the Autism Society.

Dear Mom and Dad,

I know it’s breaking your heart to see me as I am now. Most of the kids we know are starting to talk while I’m just making sounds. I’m lashing out because I’m struggling. I can’t communicate myNonverbal Feature needs, and things are just not going the way I wish they would. I scream and fight with you every time you try and bathe me because I can’t stand the feeling of water. I cringe anytime I hear thunder, and I don’t like to be touched because of my sensory issues. Even now, as we make all the adorable videos of me dressed up as one of the best looking toddlers of all time, I know things aren’t easy, and we don’t know what my future has in store.

I want to tell you, though, to keep fighting for me and believing in me because without you both — my best advocates — I’m not going to be the person I am today. There’s hope, and you both play a huge part in that. Things are going to get better, and without you that wouldn’t be possible.

At 2 and a half, I’m going to say my first words, and at 4 you’re going to find out from a doctor that I have something called autism. In 1992, it will be something you would have only heard from some of the leading experts in the field and from the 1988 movie “Rain Man.” The road now is going to be difficult, but we’re going to get through it together.

Supports are going to be difficult to come by. The numbers of autism are 1 in 1000 right now and so many people still don’t understand. Life is going to be difficult. Challenges are coming. But here’s why you should fight through the challenges…

By fighting for me every day and helping me go through occupational, physical and speech therapy for the next 16 years, while giving me support at home and in school, I’m going to grow into an adult who is a national motivational speaker and gives talks about autism across the country.

Because if you fight for me right now and never give up, not only will I be that speaker but I’ll have the opportunity to write an Amazon Best Seller, consult for a major motion picture that makes 30 million dollars, and be someone who gives you love every single day. I will grow into an adult who embraces affection.

Love,
Kerry

I hope for any parent who reads this letter — coming from a now 28-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community. We’re learning more and more about autism every day and more and more answers are coming to help our community progress.

Most important, I hope you take this letter as a sign that all parents of children on the autism spectrum can make a difference. Some days are going to be more difficult than others, but just know that you’re never alone in this community. And if you ever need someone to talk to, I’m just one message away if you click on my Facebook page.

A version of this blog originally appeared on Kerrymagro.com.

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The Critical Role of Nutrition in Therapy

This guest blog was written by Betsy Hjelmgren, MS, RDN, CSP, LDN, owner and founder of Feed to Succeed.

Essential to every person, especially a growing child, is healthy nutrition. This is especially true for children who require therapy for health issues. As a registered dietitian, not a day goes by that I Blog-Nutrition-Main-Landscapeam not reminded that proper nutrition underlies the health and well being of every child.

I recently worked with an early intervention (EI) patient with developmental delays. When we first met, he wasn’t meeting the expected milestones for his age, such as walking and talking. His parents and therapists complained that he lacked energy whenever they tried to work with him, and yet, when they encouraged him to eat, he was too tired and weak for this seemingly simple task. I recommended a feeding tube for the short term, and in one month, the child gained three pounds and began to walk and talk.

Of course, not every child who would benefit from working with a registered dietitian requires such intensive therapy. Many children, however, do benefit from an adjustment in their diets so that they have the energy and strength to meet milestones in therapy and can improve outcomes.

A child who doesn’t have the proper building blocks in his muscle and nerve endings needs proper nutrition in order to thrive in occupational or physical therapy, for example. Similarly to a garden, where a plant needs soil, nutrition and water to grow, a child needs proper food, nutrition and care to ensure the best outcome in his development.

While all children who don’t receive proper nutrition cannot function to their highest potential, in some cases, it is not obvious that they are lacking nutrition. It’s once a child responds to a new diet that it is obvious how effective nutrition is. For example, a child who is allergic to cow milk may not be getting enough protein to build muscle and may not be growing as tall as she could. Nutrition guidance, education and support can provide a more well-rounded diet.

Following is a screening tool for parents to use in order to determine when a child would benefit from receiving nutrition therapy:

  • A child who has not gained weight over 2-3 consecutive months or has not grown in height over 3-6 months
  • A child who frequently has a poor appetitive or is extremely picky
  • A child who seems thin, tired or pale
  • A child who has frequent chronic constipation or vomits
  • A child who completely avoids certain food groups
  • A child on a modified or restricted diet.
  • A child who receives supplemental feedings, such as a feeding tube or Pediasure

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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BetsyBetsy Hjelmgren, is the owner and founder Feed to Succeed in Glenview, Ill. She has been a registered dietitian, licensed in the State of Illinois, for over a decade. Registered dietitians are the only nutrition experts regulated by the Academy of Nutrition and Dietetics, and licensed to provide professional nutrition advice. Betsy is credentialed with Early Intervention for qualifying children aged 0-3 years old and is also the mother of two children. Follow her on Twitter @feedtosucceed and on Facebook.

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4 Practices Parents Can Do at Home That Will Help Children with ADHD at School

This guest blog was written by retired teacher, Joyce Wilson.Blog-ADHD-Main-Landscape

It’s common for parents of children with ADHD to be concerned for their children’s behavior at school.
But there’s no need to feel powerless. Implementing a few best practices at home will create a ripple effect and help improve your child’s behavior in the classroom, too.

  1. Encourage Physical Activity

Regular exercise has many benefits for children with ADHD, most having to do with increased brain function. Play games and sports with your child or simply go for a walk outside. The fresh air and bodily movement will help calm his restlessness and sharpen his focus.

It’s wise to let your child’s teacher know that taking away his recess time as a punishment is the exact opposite of what she should do if she wants to see an improvement in his behavior. Let her know how important this active time is for his mental focus.

  1. Encourage Organization

Teach organization and tidiness at home so your child can take these habits to school with her.

Teach her the importance of having a tidy room and work space and help her organize her school supplies. Use dividers, Post-it notes, folders, and color coordination to break her schoolwork down into a manageable, organized chunks.

  1. Create Structure

Your child will benefit from routine in the form of a daily schedule that runs morning to night. Keep schedules and to-do lists posted where your child can see them and include checkboxes next to each task on a list.

Sticking to a schedule helps children with ADHD persist with tasks that they might not necessarily feel like doing at the moment. Insisting they stick to a routine will help performing these tasks become habits for them. For instance, although it’s often difficult for children with ADHD to fall asleep, they still need to stick to a regular sleep schedule the best they can.

  1. Make Your Expectations Clear

When your child is organized, sticking to his schedule, and participating in physical activity like you’ve asked him to, make sure you’re rewarding him for his efforts and thanking him for his cooperation.

Positive reinforcement through small rewards is just one aspect of managing your child’s behavior. Set rules and make it clear to your child that you expect him to follow them at home and at school. Be specific when disciplining your child and let him know exactly how you’d like him to improve his behavior.

Be specific with your praise as well so he can continue to make you proud by doing exactly what you’ve asked him to. Giving him the praise he deserves will encourage him to continue to succeed in life at home and life in the classroom.

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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Joyce Wilson is a retired teacher with decades of experience. Today, she is a proud grandmom and mentor to teachers in her local public school system. She and a fellow retired teacher created TeacherSpark.org to share creative ideas and practical resources for the classroom.