A GUIDE TO DESIGNING A SPECIAL NEEDS PLAN THAT WORKS 

BY ALEXANDRA BAIG, MBA, CFP®

My husband is a mechanical engineer. He designs concrete, practical things like machines that put lids on jars. When we first met, I thought that his work had nothing in common with my work as a financial planner for people with special needs. But the more I watched him work, the more parallels I saw between the process each of us uses.

My husband first creates a concept which broadly captures what the machine or machine part will accomplish. He discusses it with his team and his boss, and they alter aspects here and there until they are all in agreement with the concept. Then, he begins the hard work of translating the concept into reality, keeping in mind the manufacturable machine with each of its component assemblies and sub-assemblies. Eventually, he needs to design every last component, down to tiny screws. He needs to specify the size and orientation of each thing, whether it will be made in-house or purchased elsewhere, how big it will be, and how it will fit together with every other part it needs to touch.

Sometimes, based on feedback from the machine shop workers, or other engineers, or the end customer, parts of the design need to be adapted or amended along the way in order for the final product to both work and be affordable. The process for creating a plan for your family member with a disability is actual very similar.

FIRST STEP

The first step is for your family member, supported by parents, siblings, friends, and other invested parties to come up with a high-level concept for your child's adult life:

Your family member with a disability might use MAPs and PATH to generate and refine the initial concept of adult life into an actionable plan. Frequently, these processes have a strong visual component to help the person with a disability participate more fully in planning her/his own future. You can read more about MAPs and PATH here: inclusion.com/path-maps-and-person-centered-planning.

Circles of support and a structure called Star Raft can help to identify, mobilize and sustain relationships with people beyond the immediate family who can provide insight, opportunities and support to the person with a disability. You can read more about Star Rafts here: thestarraft.com.

SECOND STEP

The second step is for your family member, you, and other members of the support team to understand how your state's public funding works. In most states, adult services are funded primarily through what are called Medicaid waivers with a small amount of additional funding coming through local grants. Medicaid waivers are programs that permit states to use Medicaid dollars to fund supports and services in small community-integrated settings rather than large, congregate institutional settings. The first thing to be clear about is that your family member needs to have and maintain Medicaid in order to access any services funded by a Medicaid waiver, whether for employment, recreation or general living support. Some states can fund a variety of kinds and levels of service through one very broad waiver that is highly customizable for each individual who is eligible. In other states, there are a number of waivers with each designed to fund a particular type and level of service.

My home state of Illinois is an example of the latter. Illinois has the "Home Services" waiver, which is managed through the Department of Human Services Division of Rehabilitation and is more directed towards people with physical disabilities. Then, there are several developmental disability waivers. The "Home-Based" waiver is basically a budget which, for adults over 18, is equal to three times the maximum Supplemental Security Income or 3 x $783 = $2,349/month. The funding can be used to pay for any type of support program or service, including paying one of the parents or a sibling to be a support worker.

There are also various levels of Community Integrated Living Arrangement (CILA) Waivers, ranging from a few hours a week worth of intermittent support to 24/7 support in what one might term a "group home." Because each state has the freedom to organize its own Medicaid waivers, it is important to understand how your state's waivers work and what are the criteria for eligibility. To take Illinois as an example again, here, eligibility is complicated. You can be eligible either because you have no living natural caregivers (parents) or because your need for support exceeds what untrained caregivers can provide or because your "number" was "pulled" randomly under the state's attempt to comply with a consent decree and reduce its waiting list.

In Illinois, the range of waiver funding types and levels, complicated further by the variety of ways to become eligible, means that no one can predict with much accuracy when an adult with a disability will receive funding, nor how much the person will receive. As one of the main advantages of any kind of financial planning is to run "what if" scenarios, I run multiple variations on each client's plan. In the best-case scenario, we assume the family member with a disability receives a generous level of funding at exactly the moment s/he wants to move out of the parental home—perhaps when the parents retire and want to downsize. In the worst-case scenario, we assume that same family member does not receive any funding until the parents are so old they cannot, literally, provide support anymore. Especially if the person with a disability is a child, adolescent, or young adult, we may also run variations based on a range of assumptions for that person's future independence as s/he matures.

THIRD STEP

Before working as a financial planner for people and families with special needs, I spent seven years running a faith-based community where people with and without disability live together. The primary living expenses of the community members with disabilities –room and board, utilities, transportation, employment supports, or daytime activities—were covered by the waiver. But I quickly became aware of how many expenses that the rest of us take for granted are NOT covered by the waiver. Identifying such non-covered expenses is the third step in the special needs planning process.

In our community, people liked to go out for coffee, lunch and dinner, see movies, go bowling, attend concerts, go to the zoo and the arboretum, travel, and buy each other and family members presents. None of these expenses are covered by the waiver. Neither are personal electronics, cell-phone plans, clothes beyond very utilitari an basics, sheets, personal care products, room decorations, bicycles or sports equipment, alcohol or any other special dietary preferences that had no medical justification. These are just examples, but there are hundreds of other such uncovered "luxuries."

Moreover, some very necessary items, such as eyeglasses, hearing aids and certain kinds of therapy may be covered—but only with certain frequency, even though the person may need them provided, updated or replaced more often. Alternative medicine, such as massage, acupuncture or herbal supplements are not covered at all. Some dental work is covered, but it may be very hard, for example, to find an oral surgeon who takes Medicaid, if that is the person's only insurance.

In Illinois, every person with a disability is permitted to keep $60 of her/his Social Security benefit per month, but it would be naïve to assume that this will begin to cover all the extra expenses. In order to have these kinds of items and activities that make life enjoyable, somebody needs to supplement the public benefits.

When I build a plan with a person with disabilities, I ask that person to be very clear about what he or she enjoys. Many times, the family is so used to covering these additional expenses, that they underestimate their aggregate size. I then advise very clearly on what the Wavier will and won't cover. And I ask the family to understand very clearly that the gap between what the waiver pays for, and what the person needs and wants, will need to be plugged every year for the rest of that person's life. If the person with a disability is working or is expected to work, we first consider what portion of these non-covered expenses can be paid from the person's own work earnings, keeping in mind that an agency that provides full-time supported living is expected to collect not only most of the Social Security paid to the people they support, but also a portion of those peoples earned income, if there is any.

In almost all cases, even when the person with a disability is well-employed, the amount of earnings left after the agency's bill are insufficient to cover all the extra expenses. Moreover, even a person who has a strong work ethic may get laid off and at some point, s/he will, like the rest of us, retire. At that point, if no earlier, the family must take over providing supplemental financial resources to plug the gap.

FOURTH STEP

Determining the aggregate amount needed is the fourth step in the special needs planning process. Let us assume, for example, that a couple had a child when they were both age 30. The child has a disability that does not impact her/his life expectancy. As a result, the child is likely to outlive her/his parents by at least 55 years. If the child needs $10,000 per year to cover all the extras, then the parents are going to need to leave the then adult child $225,000 to $275,000, depending on one's expectations regarding future inflation and the rate of return that will be earned on the money as it is invested.

Of course, this money cannot be left to the person with a disability outright if s/he has Medicaid waiver-funded supports—because the person needs to maintain Medicaid eligibility to maintain services, and with a very few exceptions for workers with disabilities, Medicaid has a countable resource limit of $2,000/person. A person with a disability who abruptly inherited several hundred thousand dollars or even a significantly smaller sum, would lose her/his Medicaid-funded supports until such time as the overage was "spent down." That would either require a long time, or see the assets depleted hastily, thus undermining the parents' intent to keep them invested to provide supplemental funding over the long term.

FIFTH STEP

Instead, the inheritance from the parents or, indeed, any other individual, should be left to a properly-written special needs trust. At this point, if not before, it is necessary to engage an attorney who specializes in creating such trusts and related documents. This is the fifth step. The trust must contain certain language in order to serve its purpose, and that language must be reviewed and updated to keep up with any changes in public benefit eligibility. I cannot stress enough that for both financial and legal planning, it is imperative to engage professionals who have a solid understanding of the rules around Social Security, Medicaid eligibility.

A trust, special needs or otherwise, is not a type of account. Rather, it is a type of legal ownership. The trust, itself, is a legal person. Assets held in accounts titled in the name of the trust are owned BY the trust itself and NOT by the person with a disability. This is why assets held in a properly-written special needs trust do not count for purposes eligible for Medicaid, including Medicaid waivers and Supplemental Security Income, the means-tested cash benefit administered by Social Security.

The trust may own checking and savings accounts, stocks, bonds and mutual funds in brokerage accounts, a house, a car, gold, collectibles—or pretty much any other asset that could be owned by an individual. The trust may also be the beneficiary of life insurance policies as well as annuities, qualified retirement accounts and, sometimes, pensions. While having a trust as the beneficiary of a life insurance policy is straightforward, having one as the beneficiary of the other three financial instruments is more complicated and requires detailed planning.

Since their advent in 2016, ABLE accounts have also been available to hold money in such a way that it will not disrupt benefit eligibility. However, since ABLE accounts can only accept cash contributions, and since annual contributions are limited, it is impractical to use an ABLE account to hold all but the smallest of inheritances.

SIXTH STEP

The second to last step in the special needs planning process is to determine the most cost-effective and lowest-risk way to fund a special needs trust. Certain investments, such as the stock of small, startup technology companies, may have a high expected return, but also carry a high risk. Some investments like US treasury bonds, may carry low risk, but generate a return that barely keeps up with inflation. Any asset that is traded on a market from stocks and bonds to commodities and real estate may experience a weak period, sometimes a prolonged one. Qualified assets, such as IRAs, have both tax benefits and tax consequences when the money is withdrawn either too quickly or too slowly. One can count on the return within a non-variable life insurance policy purchased from a reputable, well-rated company, but it may be hard to access the funds if they are required before the death of the insured parent. It is, therefore, very important to consider funding a special needs trust with a variety of assets with different expected returns, risk profiles, tax characteristics and dates of availability. When considering all financial instruments, it is also crucial to consider fees, since the return on an investment is not what the investment makes, but what the investor keeps after fees and taxes.

The process for creating a viable special needs plan is, as it turns out, very similar to the process for designing a workable physical product. You start with a concept, work downwards to identify the systems and components required to build it, understand the various sources for the components, run multiple scenarios to stress-test success under a range of potential scenarios, and figure out the most cost-effective, lowest-risk process for acquiring and assembling the components to make the product.

THE FINAL STEP(S)

The final step in creating a functional special needs plan, like the final step in designing a product, is not really one step, but many. Coke™, having introduced many flavors and sweeteners for its flagship soda recently introduced Cinnamon Coke™ for the holidays. Apple has introduced the iPhone 11, the latest iteration providing more and better features than previous versions. Like these and pretty much all products and services, the plan must be reviewed and updated on a regular basis to reflect changes in the life of the person with a disability and her/his family, as well as changes in the local mechanisms for funding disability support, and changes in the broader economy. •

ABOUT THE AUTHOR:

Alexandra Baig has an MBA from the University of Michigan and her CERTIFIED FINANCIAL PLANNER™ designation, and is a member of the Academy of Special Needs Planners. Alexandra's first career was as a stock market analyst in Hong Kong and China. A search for a more meaningful life's work took her to L'Arche, an international, interfaith network of communities where people with and without intellectual and developmental disabilities share life. Her work at L'Arche introduced Alexandra to the financial planning challenges of people with physical, intellectual, developmental and behavioral disabilities and their families. In particular, she is well-versed in the government benefits available to people with special needs and the rules governing them. Her goal is to help people with disabilities and their families make the most of public and private money to live the life they chose.

KNOW THE RANGE OF OPTIONS FOR SPECIAL EDUCATION PLACEMENT

BY LINDA HELMIG BRAM, PHD

What type of special education is best for your child? Families are empowered when they have knowledge of what is available by law.

Inclusion of children with special needs in general education classrooms is an important legal right. This model works well for many children. But what about children whose learning needs are more extensive and cannot be served in an inclusion classroom at their neighborhood public school?

Parents are often unaware that public schools are legally obligated to provide a continuum of educational placements for children with disabilities. These range from general education inclusion classrooms to private placements paid for by the district (see Table). In this article, I empower families with the knowledge they need about the range of special education placements in order to improve their ability to advocate effectively for their children.

As a psychologist, I work with many children who struggle in school and parents who feel lost and don't know what to do. As a parent of children with special needs, I have also been unsure of how to proceed when their learning needs were not being met. There can be many reasons for a child's lack of academic progress. In my experience as a psychologist, all of the child's needs – academic, social, emotional – should be considered when trying to identify the source of their challenges at school. Does the child have an undiagnosed learning difficulty? Are they being bullied because of poor social skills? Does the child require additional services or testing to identify what's going on?

Schools are legally obligated to evaluate any area of concern or "suspected disability," including social and emotional challenges. There are a small percentage of children on Individual Education Plans (IEPs) who, despite the best efforts of the public school's general and special education teachers, require more specialized teaching methods, smaller classrooms, or other modifications to their learning environment. For example, children with visual or hearing impairments are often referred to publicly-funded specialized private schools.

Public schools are also unlikely to change a child's placement or services as long as they are making "adequate progress" on their IEP goals (another legal requirement). Some parents and students prefer a shift from the inclusion classroom and to a special education classroom or private school that is technically more "restrictive" but also provides more specialized, expert intervention. Advantages include exposure to highly-trained teachers and to peers with similar profiles. Disadvantages include less exposure to and modeling by typical peers and families feeling less connected to their neighborhood community.

KNOWLEDGE EQUALS POWER: All of the child's needs should be considered when trying to identify the source of their challenges at school.

BALANCING ALL THE STUDENT'S NEEDS

Consider Emily, a girl with spina bifida, whose parents worked tirelessly to keep her in a general education classroom, though she struggled in and hated school. When she was 13, she attended a summer camp for children with physical and developmental disabilities and, for the first time, felt socially at ease and genuinely happy. Her parents came to realize that they had been achieving "inclusion" in the legal sense (i.e., she attended her neighborhood public school with typical peers) but that Emily never felt truly included with her peers, a growing need as she approached her teenage years. Her parents pursued a school serving a similar population so that her academic, social, and emotional needs could be more fully met by teachers with greater expertise in her disability.

It is important to note that the process for securing a specialized classroom or private school can be slow (e.g., 1-3 years or more). Parents cannot simply choose the next option along the continuum (see Table). The child's IEP team must refer the child to a more restrictive setting and can only legally do so when they conclude that the child is not making adequate progress on their IEP goals.

As a first step, public schools may refer to their in-district programs—"substantially separate classrooms" or "Collaboratives"— that serve a particular population (e.g., children with autism, emotional/behavioral difficulties, or learning disabilities). For some children, this works well. However, others may not make adequate progress and require referral out-of-district. These decisions are rarely clear-cut or easy. Parents and schools alike are faced with complicated decisions around when a referral to a special education private school is warranted. Parents sometimes hire educational advocates or attorneys to help resolve the disagreements. Some states offer more affordable options for families, including mediation, and free or low-cost advocacy and legal consultation.

"Caleb" is a boy I worked with who had autism and anxiety and was prone to behavioral outbursts. During kindergarten, his teachers and parents agreed that he could benefit from moving from the inclusion classroom to a specialized class for children with autism. This worked well for about a year. In 2nd grade, Caleb regressed in his communication, life skills, and behavior.

The family collaborated with their school to try different approaches and add more services. Caleb continued to struggle, and his parents felt like they were at the end of their rope. They researched special education private schools and discussed promising options with the IEP Team. Although it took another year of negotiating—a process that unfortunately necessitated their hiring an attorney to make their case – Caleb was referred to a private placement. His parents noticed a difference within the first two months. In fact, once his challenging behaviors settled down, his teachers discovered that he could read! Caleb also began to learn a host of new skills that his parents never imagined he could, especially given his past regression. This family was happier than I had ever seen them!

As a parent, I have also seen firsthand the benefits of a publicly-funded private school. My daughter has severe autism, intellectual disability, and seizures. She is a preschooler in our public school's special education program where her teacher informed me that they didn't understand why the other children were making gains in communication, but my daughter was not. The school district went above and beyond to figure out how to meet her needs. They paid for her teacher to receive behavioral training from an agency two hours away. I will always be grateful to them for their efforts to educate her and keep her in the public school setting as long as possible. However, with the combination of her lack of progress on any IEP goals, increased self-injury and physical aggression at school and home, her IEP Team agreed that a highly specialized private school was necessary.

MAINTAINING COLLABORATIVE RELATIONSHIPS WITH TEACHERS 

When more restrictive placements are made, I want to be clear that it is not a failing of the public schools by any means. Consider this analogy: public schools are similar to general practitioners or pediatricians who are capable of treating many conditions that come their way. However, there are times when a more complex medical problem emerges, and doctors refer to specialists who can offer more in-depth care. Similarly, special education private schools fill in the gaps that public schools cannot be expected to.

Finally, parents should take care to maintain collaborative relationships with the child's teachers when resolving disagreements about school placement, particularly if these become contentious. When I attend IEP meetings as a professional or parent, I try to remember that we are all on the same side – the side of the child! – and want the child to succeed. When parents know the range of options available, they can better advocate for their child and know that there is hope.• 

ABOUT THE AUTHOR:

LINDA HELMIG BRAM, PhD

Linda Helmig Bram, PhD, is a psychologist who specializes in supporting children, adolescents, and adults with disabilities and their families. She is a Part-time Lecturer at Cambridge Health Alliance/Harvard Medical School, and a consultant at the Federation for Children with Special Needs, a parent advocacy organization in Boston. Dr. Bram created a website to empower parents called Special Education Placement Options at fcsn.org/sepo. She is also a parent of children with special needs.

DISABILITIES AND COUNSELING SERVICES

The foundation for any discussion of counseling services is an understanding of the basic types of disabilities and counseling services that exist. There are thirteen categories of disabilities recognized by the Department of Education as being covered by the Individuals with Disabilities Act, the nation's special education law. 

BY JOHN T. SPOEDE, JR., PH.D., D.MIN., LPC-S, LCDC, NCC, CSC

Parenting children through the highs and lows of growing up in the twenty-first century can be daunting under any circumstances. For parents of children with exceptionalities, that process can be even more complicated. Given the scope and wide variety of disabilities that exist, it can be overwhelming to navigate and determine which types of counseling therapies would be useful, what types of outcomes should be expected, and understanding how to make the best decision and best advocate for you and your child while receiving counseling services.

What types of disabilities & counseling services exist?

There are thirteen categories of disabilities recognized by the Department of Education as being covered by the Individuals with Disabilities Act (IDEA), the nation's special education law. (20 U.S.C. § 1400 (2004)).

(34 C.F.R. § 300.8, sites.ed.gov/idea/regs b/a/300.8, containing regulations for implementing the IDEA).

Basic counseling services can be a benefit to children diagnosed with one or more of these disabilities. Types of counseling include individual counseling, group therapy, and family therapy. Mental health counseling can address both short-term, acute concerns that arise in a child's life, and it can provide long-term, ongoing support to children and families navigating life with a disability. Finding the counseling paradigm that will work for a particular child involves consideration of many different factors.

is counseling approriate?

This is a common question. The very short answer is, one will find it worth one's time and effort to schedule an appointment with a mental health professional – whether that someone is in acute mental distress, or experiencing mental health issues that negatively impact his or her day-to-day functioning, or if he or she has been referred to therapy by another professional, such as a medical doctor, school personnel, or member of the clergy.

Well-qualified mental health professionals will be able to help potential new clients assess whether counseling would be beneficial. Many times, the therapist will use the first session to learn about the presenting issues, make an initial diagnosis from the DSMV, and determine if therapy is appropriate or if a referral is needed. There are some things that counseling therapy cannot fix, so an open and honest discussion between the client and therapist about the things the clients would like to work on ensures that everyone is on the same page about the scope of the treatment plan. It allows the therapist to honestly assess the viability of therapy in each individual case.

Another consideration in determining whether to seek counseling is whether your child is receiving services through the school. Just as there are IEPs (individual education plans) for so many areas in school, there is also the option for the school to recommend counseling services through a counseling IEP. In general, counseling IEP's are put in place to assist the student with being successful in the educational setting. This implies that a counseling IEP will not address family issues, or issues that are not directly impacting the educational process or the student's learning environment.

If someone is unsure about the appropriateness of counseling, you may want to also ask if you are utilizing and taking advantage of non-counseling resources such as formal and informal support groups, organizations, publications, conferences, and community support related to the child's disability or presenting issues. There are numerous local, state, national, and international resources available; be sure to find the ones that are helpful to you; access and use them. In summary, as a rule of thumb, counseling of some kind is appropriate when the child has unmet social, emotional, or developmental needs resulting from their disability or their experiences, either generally or in a specific situation or circumstance.

When is counseling most helpful?

Most research supports that earlier interventions have better long-term outcomes rather than delayed interventions. It is also commonly supported that if interventions are started earlier, the intervention takes less time and costs less money. Further, if there is an established relationship with a therapist prior to a crisis or an emergency, then accessing and utilizing counseling resources will be a much smoother process. As mentioned in the previous section, counseling is appropriate when there are emotional or relational issues that are causing problems in day-to-day functioning, or to address acute crisis, or address cyclical concerns, or to prepare for particularly challenging transitions. If the child might benefit, seek out a counseling therapist to evaluate if now is the right time for entering counseling. A good therapist will help figure out the best timing for therapy.

What types of therapy exist?

There are three major type of counseling: individual, family and group.

Individual therapy focuses on a therapeutic relationship between a mental health professional and an individual client. A therapeutic counseling "hour" typically lasts between 45 and 60 minutes, and the treatment plan accounts for the theoretical orientation of the therapist and the presenting issues of the client. Individual counseling can last as few as eight sessions or can continue for years, depending on the diagnosis and agreed-upon treatment plan. Individual counseling allows the client to focus on and address their own issues, but it can sometimes be difficult to address larger family issues in individual therapy. Further, the therapist is dependent on the individual client to provide the most important information related to counseling – i.e., insight into the presenting issue and mental health condition – and sometimes clients, especially younger or more immature clients, are not a good judge of which information is needed to progress in the therapeutic process. Parents can assist by providing information to the therapist.

Group counseling ideally entails groups of approximately eight individuals with one therapist, or twelve individuals with two therapists. The exact nature of group counseling can vary widely depending on the participants and practitioner involved: groups can be smaller or larger, be open to new members or closed, can last for as little as a few weeks or can continue for years, and can provide therapy from a large variety of theoretical orientations in sessions lasting one hour or several hours. Group counseling's strength lies in helping clients not feel isolated. It allows people to work in a group setting on issues and to learn to support others in similar situations. Drawbacks of group counseling are that the individual does not get to focus only on their issues, some special needs can be hard to fully accommodate, and confidentiality cannot be guaranteed because there are other clients in the room.

Finally, there is marriage, couple, and family therapy. Family therapy focuses on issues related to family dynamics, and the entire family is the client of the therapist (instead of the individuals). There are times when what is best for the family may not align with what is best for an individual within the family. There will also be a theoretical orientation (think Cognitive-behavioral therapy, DBT, solution focused therapy, etc.) and prescribed treatment plan, and the number of sessions can vary widely. Family counseling sessions can span 50 minutes all the way up to two hours. In family therapy, the therapist can observe family interactions in real time, to work on issues, and provide immediate feedback and strategies for the family to implement during the session. However, in family therapy, each individual's needs are secondary to the development and healing of the family system as a unit. Further, family therapy may not be the best setting for addressing issues that are bubbling beneath the surface, such as in cases where families struggle to be open and honest with each other.

What types of counselors provide relevant mental health services?

There are so many kinds of counselors in the world today; it is important to discuss differences that exist between various therapists. This will not be an exhaustive discussion, but an introduction. Common among all the mental health professionals is that they are governed by state rules and regulations, although the exact name, title, or designation can vary from state to state.

certfications

One counseling credential is the Certified School Counselor (CSC). These mental health professionals work in the school setting, and are specifically trained in education counseling, crisis counseling, and other school-related and developmental issues. ( schoolcounselor.org)

licensed mental health professionals

Licensed counselors can have different designations depending on the state in which they practice. The American Counseling Association has a chart summarizing the different designations for licensed counselors: ( counseling.org/docs/licensure/72903_excerpt_for_web.pdf). Many states use the "LPC" designation, standing for Licensed Professional Counselor. After completing a master's degree, the counselors must go through a supervised internship before they can be fully licensed to see clients. The scope of the counselor's practice is dictated by each state, but generally includes all types of counseling except in the areas of projective personality counseling or severe mental illness such as clients who are dissociative (i.e., not aware of time and place and current reality).

Marriage and family therapists (LMFT) are trained in family systems. These mental health professionals are trained to work with couples and families on system issues, including family dynamics, communication, and boundaries within families. ( aamft.org) Psychologists are doctoral level, trained mental health practitioners who can practice in virtually any area of mental health treatment. There are many kinds of psychologists, such as counseling psychologists, clinical psychologists, or school psychologists, most of whom graduated from programs associated and accredited with the American Psychological Association. Psychologists complete a one-year approved internship as part of the licensure process. There are also master's level psychology mental health practitioners, such as psychological associate and licensed specialists in school psychology. ( apa.org and nasponline.org)

Social workers are known for understanding systems and how to help clients work within systems to obtain maximum benefits. Though the exact designations can vary by state, there are two main designations for social workers: Licensed Master Social Worker (LMSW) and Licensed Clinical Social Worker (LCSW). The LMSW works mainly in mental health settings, connecting clients with services and acting as a case manager. The LCSW has specific training and post-master's degree supervision in providing counseling services to clients. They generally complete a 2-year internship after completing their-master's degree. ( socialworkers.org)

Psychiatrists generally do not provide counseling services. They are classically trained as medical doctors and are tasked with prescribing medication, as well as monitoring the effects of the medication on their clients. ( psychiatry.org) Obtaining all of these certifications and licenses also involves passing tests.

specializations and additional credentials

Art therapists incorporate art in the therapeutic relationship. "Art therapy is an integrative mental health and human services profession that enriches the lives of individuals, families, and communities through active art-making, creative process, applied psychological theory, and human experience within a psychotherapeutic relationship." ( arttherapy.org)

Another designation is related to Applied Behavior Analysis (ABA). The Board-Certified Behavior Analyst® (BCBA®) is a designation related to completing education and supervised training prior to becoming certified to provide independent behavior analysis services. ( bacb.com)

Many states have specific licenses for chemical dependency counselors. These counselors with the credentials have specific training and experience working with addictions and substancespecific disorders. The exact nature and scope of services available from chemical dependency counselors varies by state. It is also important to note that many other credentials include chem ical dependency counseling in their scope. This means that other licensed professionals such as counselors, social workers, and psychologist can provide services related to chemical dependency issues. However, chemical dependency counselors should only practice in the areas of chemical dependency. ( naadac.org)

Music therapy is defined as the clinical and evidence-based use of music interventions to accomplish individualized goals for people of all ages and ability levels within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program ( musictherapy.org).

There are also national credentials for mental health professionals. These national credentials do not allow mental health professionals to practice within a state, but they can signify that the mental health professional's training and practice meets higher standards. One example of this type of credential is the National Certified Counselor (NCC). ( nbcc.org)

A registered play therapist (RPT) is a mental health practitioner who has been educated and has completed supervised experience in the area of play therapy. In short, play therapy is a type of therapy that can be used with any age, where creative forms of expression and therapeutic progress are encouraged. Many times, play therapy is used with children who are not mature enough for traditional talk therapy, but it can also be used with adolescents and adults. ( a4pt.org)

This is in no way an exhaustive list, but it is intended to introduce the idea that there are varied mental health professionals who work with individuals with exceptionalities.

how long should therapy last?

The length of therapy is dependent on the presenting issue, the identified disability, and the context for each person. In an ideal world, a counselor is constantly working with their client to work themselves out of a job. Meaning, as a therapist, my goal is to help my client get to a healthier place than they would doing things on their own; or get to a healthier place more quickly than they would on their own. Then once my job is done, the counseling relationship is terminated. This means that the client returns to living their day-to-day life without meeting regularly with me.

It has been my experience that insurance companies like to allot 8-12 sessions per presenting issue. This time allows the therapist and client to cover psychoeducational materials, strategies to implement to address the issue, and learn about transferable skills that can be applied by the client on their own, in other setting. On the other hand, some clients will require a more long-term counseling relationship. These types of counseling relationships can even span years. This type of counseling is for people who have presenting issues that are resistant to treatment or disabilities that require a more intensive, long-term approach and intervention. Quality therapists will set goals and develop a treatment plan setting out the amount of counseling that would be beneficial, early in the counseling relationship.

What are the short–term or long-term goals?

As you enter a counseling relationship with a therapist, it is important to understand both the short- and long-term goals of therapy. Therapists create an individualized treatment plan for each client. The treatment plan should include a combination of the pre senting issues, or the reasons the client sought therapy in the first place and goals related to the clinical judgement of the therapist. For example, a client may seek out therapy to improve communication within the family, because there is a lot of yelling and fighting. The therapist may identify the cause of the fighting to be unresolved trauma, anxiety, or stress. Therefore, the treatment plan would most likely include goals related to improved communication and increased coping strategies for stress.

The short-term goals will be goals that are achievable in the near future (think weeks to a few months). Long-term goals extend beyond months, or, even if they can be obtained quickly, have a maintenance component associated with them. The treatment plan and the goals should act as a road map for the overall therapy the client receives. It is important to note that the treatment plan and goals can evolve and change over the course of the therapeutic relationship, depending on the client's need and the therapist's professional judgement

how does one pick a counselor?

For many, there is a challenge associated with finding a mental health professional. Some will turn to the internet to search and some will access their network of families who have similar experiences to themselves. When selecting a mental health professional, it is important to acknowledge that not all providers are the same. Part of the selection process includes finding providers who are available and compatible with clients. This means that you should actively try to screen therapist as you work at selecting the right one to meet your needs.

Many times, therapists will speak at conferences, universities, or at community organizations such as churches. If you can participate in these types of events, you may get a chance to hear from, or meet a perspective therapist. Many therapists have front office staff who can assist with answering general questions and assist with scheduling appointments and answer billing questions. Some will also return phone calls to perspective clients, to introduce themselves and screen the clients to make sure they are a good fit for the services they provide. However, the introductory phone call is not a therapy session, or a time for the perspective client to share their entire story. Many times, phone calls are limited and brief.

It is my opinion that all parents, especially parents with children of exceptionalities, should have a network of other parents to access as a resource. Many times, these networks will have a combined knowledge and experience that will assist you in the process of finding a provider. Doctors, pediatricians, schools, churches, and other organizations will often create and maintain a referral list. In many cases, it is worth your time to access these types of referral lists. Some lists are vetted, some are put together via internet searches, and some are created based on request from therapists to be added to the list. However, the list is created, it has the potential to be useful in your search, and it is worth inquiring about how the list was created and maintained.

There are also many online directories that can assist you with finding clients. Some of these directories are subscriptions that the providers pay for (i.e. Psychology Today), while other networks are associated with licenses or professional organizations. Many insurance companies will also create a list of providers that list in-network mental health professionals. However, when all is said and done, there is an element of choice associated with selecting a therapist.

It is also important to note that there are times where a therapist is not accepting new clients, but you can be asked to place on a wait-list. At one point, I had a waiting list six months out, and there were a few clients who opted to wait for an opening with me over finding a different therapist. At the end of the day, it is important that you find a therapist that you are comfortable with that is a fit for you and your family. Do not feel like you must persist with the first therapist you meet with, especially if it is not a good fit. You have the option to seek out additional professionals until you find the right therapist to address your specific needs.

There are a few main ways to pay for counseling therapy: out of pocket, insurance, and EAP (employee assistance program). Out of pocket refers to the entire cost of counseling being paid for by the client or guardian. When one uses an insurance company, the individual is expected to pay their portion of the cost, while the insurance company pay their portion. An EAP usually pays for a limited number of sessions per person. There are pros and cons to each of these payment options. For those who have an EAP, there is generally a prequalification process and there are a limited number of therapists who are approved to accept EAP clients. There are even some programs where you are assigned a therapist.

There are some obvious down sides to this system, and lack of choice associated with it. However, EAPs may cover up to 100% of the cost of the counseling sessions for a limited number of sessions. However, once the allotted number of sessions have been used, the client then reverts to insurance or out-of-pocket payments.

For those who use insurance, there will most likely be therapists who are in-network and out-of-network. If you find a therapist who is in-network, the therapist has entered into the prearranged agreement with the insurance company. This agreement dictates the reimbursable rate for procedures being provided, and the portion or amount that the client will owe for each session. The downsides to this arrangement is that there is a third party now involved in the counseling process, and the insurance company can dictate the number of sessions you are approved to use and who you are allowed to use. They will also require a diagnostic code, which means your mental health provider will be required to share with an outside party, aspects of the counseling assessment, relationship, and details you have shared during the therapy session. Insurance companies can even go so far as to require a therapist to submit copies of progress notes for each session that is provided. At this point, aspects of your therapy are shared with a third party and can have various repercussions.

In addition to in-network therapy, there are out-of-network options on some insurance plans. This means that you find a therapist who meets the criterion of the insurance company, you pay the entire price of therapy, and then you submit to the insurance company for reimbursement of the services you have purchased.

In general, the therapist must be fully licensed (not a student or a supervised intern). Additionally, the reimbursement rate is generally at a lower percentage than an in-network provider, and the insurance company will only reimburse based on a predetermined allowable rate. For example, if a therapist charges $150 per session, but the insurance company only has an allowable rate of $60 per session with a reimbursement rate of 50%, then you would only receive a reimbursement of $30 per session (even though you paid $150 per session). Additionally, you will be required to submit additional paperwork in order to get the reimbursement approved by the insurance company. However, the cost of the therapy, may count towards your annual healthcare costs. These details vary so check with your insurance company.

For those who decide to pay out-of-pocket, the entire cost of therapy is paid for by the client. Many providers take most forms of payment (cash, check, and credit cards), but you need to confirm with you selected provider. Additionally, many of the services provided can be paid for, or reimbursed from a federal FSA (flex spending account). In this arrangement, the entire counseling relationship exists between the client and the therapist, and no third party dictates the number of session or receives information about the therapy or services being provided.

Additionally, you have the ability to select a student, or intern to provide services. Many times, the services provided by these types of mental health professionals are heavily discounted, because they are new to the profession. On the other hand, you will also have access to some elite specialized counselors who have experience and expertise that allow them to opt out of being an in-network provider. Though these services come at a premium, there is the expectation of advanced and high-quality services being provided. There are pros and cons, regardless of the arrangement you enter with a therapist.

What can I expect? What kind of outcomes?

During your initial, or intake, session there will be a lot of paperwork to complete. Amid the paperwork is usually a statement of expectations for therapy and the possible outcomes associated with therapy.

In short, there are no guarantees associated with the outcomes of therapy. Therapy is not a miracle cure. On the other hand, there have been many research studies and evidenced-based treatment protocols created. While there is no guarantee associated with the outcome of therapy, there are many research studies that report the potential benefits to therapy. Here is a link to an article entitled "50 Signs of Good Therapy" ( goodtherapy.org/blog/50-signs-good-therapy- 0110119). Number three on the list states, "Your therapist explains the therapeutic process and how you can benefit from it, without guaranteeing your success or promising that "everything will be okay." The bottom line is that no one can make such guarantees – neither the therapist, nor you."

conclusion

Though the process of starting counseling therapy may seem daunting, the long-term benefits are well worth the time and effort. I strongly recommend that parents with children who are exceptional, lean into their peer networks and learn more about the best counseling service providers in your area. •

ABOUT THE AUTHOR:

John Spoede, Ph.D., D.Min., LPC-S, LCDC, NCC, CSC is Director, Center for Research and Doctoral Studies; Program Coordinator, Ed.D. in Mental Health and Human Services; Assistant Professor, Houston Baptist University. He currently practices counseling at Renewing Hope Counseling Center in Houston, TX.

HOW TO RECOGNIZE DYSLEXIA IN YOUR CHILD

BY JILLIAN KASTER

Growing up, I had beautiful name: Jillian Rose Periolat. Periolat is French and pronounced /pair/e/o/lay – four syllables that are meant to roll off the tongue. Of course, even adults meeting me for the first time would not know how to pronounce this foreign name, so whenever I joined a new recreational activity as a child, the first question was, "Hey, kid! How do you say your last name?" I'd look up at these coaches and want to say, "You're the adult – you tell me!" The truth was, I didn't know how to pronounce my last name, and I was embarrassed to admit it.

A reading program coach shares her struggle with dyslexia, helps identify common situations children with dyslexia experience – and suggests initial steps to help your child get needed support.

When my family members would say it, I'd repeat it, but I was constantly taking out a syllable, pronouncing it /pair/ /o/ /lay/, which now feels like stop and go traffic in my mouth. My brother would tease me about not even knowing how to pronounce our last name, but every time I'd compare my way to his, I couldn't hear the difference and continued to stumble. This resulted in years of me doing everything in my power to avoid ever having to say my last name.

Other areas in language, most obviously reading, posed challenges for me throughout schooling. Eventually, at 34 years old, I found out that my sense of confusion and shame stemmed from the fact that I have dyslexia.

TURNING DESTRUCTIVE THOUGHTS INTO OPEN CONVERSATION

As a child, I'd spent a lot of energy hiding my struggles from my parents and teachers, but when I was diagnosed, I made the decision to turn my destructive thoughts into open conversation. I was an implementation coach for a reading program when my diagnosis was confirmed, so I've had the opportunity to share my newfound information on what dyslexia looks and feels like with educators across the country. Most of the time, they're surprised to hear that one in five ( dyslexiacenterofutah.org/Statistics) children has a language-based learning disability – the most common of which is dyslexia. Many educators I've met, like myself until recently, don't have the training to properly identify students with dyslexia. There's a common misconception that students with dyslexia see letters and words backwards. That's simply is not true. This myth and others like it can often impede a student from getting a proper diagnosis and the support they need. Students with dyslexia often fall through the cracks and develop astonishing coping mechanisms to make it as far as I did.

The first thing parents and family members need to know is that having dyslexia has nothing to do ( nih.gov/news-events/news- releases/nih-funded-study-finds-dyslexia-not-tied-iq) with a person's IQ – of course, no student who struggles to read is going to inherently think that. That's something an authority figure needs to tell the child until they believe it. Before offering that essential support, parents need to know what dyslexia looks like. Here's how you can recognize the characteristics of dyslexia, identify common situations children with dyslexia experience, and take initial steps to help your child get the support they need.

RECOGNIZING THE CHARACTERISTICS OF DYSLEXIA

Dyslexia is rooted in a lack of phonemic awareness, which is the ability to hear and manipulate sounds in words. This shows up for young children in the form of delayed speech and then, later, difficulty pronouncing words and identifying and manipulating phonemes within words. This might manifest as the inability to recite nursery rhymes. As children get older, it shows itself as complications mastering the names and sounds of letters, weak spelling, lack of fluency in reading, guessing at words while reading, or laborious reading that leaves the child exhausted. All of this can be happening while other areas of the child's development seem to be on track or even above average, especially when it comes to insight, higher-order thinking, imagination, empathy, problem-solving, and strong comprehension of stories read aloud to them. Students who have weak phonemic awareness might have a hard time:

When I was in junior high, we'd be given a list of about 10 vocabulary words that we would be tested on weekly. We'd have to correctly spell and give the definition of each word. Often, I would know the meaning of the word because there was enough context in the definition for me to get the gist. However, when it came time for me to accurately read and pronounce the word, I was lost.

Part of the weekly assessments was matching, where you'd draw a line from each vocabulary word in the left column to its definition on the right. I remember thinking things like "The word that starts with 'r-a-m' is the one that means 'noisy and out of control.'" Given my weak decoding, I'd stumble to find a definition, but once I did, I'd match it to the r-am word, not even knowing that the word I was referring to was rambunctious. These vocabulary assessments were just a tiny part of an entire day filled with what felt like traps and puzzles for me to navigate – all while still trying to look cool and be popular!

COMMON BEHAVIORS OF CHILDREN WITH DYSLEXIA

Avoiding work: As you can imagine, reading assignments were exhausting for me. I spent more time with the book cracked open fake-reading than actually reading. Why? Because reading left me feeling defeated. When you're not taught to decode to mastery and you're left trying to decipher what feels like every single word in the text, it leaves you drained. Reading aloud was like asking me to put my shame on display, something I was not willing to partake in. Lucky for me, I was on the swim team and the chlorine from the pool left me constantly congested. Whenever I'd anticipate being called on to read aloud in class, I'd excuse myself to blow my nose. I kept that up for about eight years through middle school and high school. Students don't need to develop these coping mechanisms, but they have no choice if they aren't getting the help they need.

Mispronunciation of words: Just as I had confusion with my last name, I'd stumble over a plethora of other words. "Nail polish" was "pol-nalish," "specific" was "pacific," and for some reason I couldn't keep living room and family room straight, either!

Thankfully, at some point in grade school, I finally got my last name down. It wasn't until decades later, when I started teaching phonemic awareness lessons to my students, that I realized the missing link and how much I benefited from the explicit instruction in phonemic awareness. 

Lack of Rote Memorization: Troubles with rote memorization can often be associated with dyslexia. It might feel like you quizzed your child on letter names and sounds, or states and capitals, or multiplication facts a million times. Just when you think they have it mastered, they miscue again. For people with dyslexia, sometimes the "easiest" material causes the most trouble. But give a child with dyslexia a chance to engage in meaningful work of higher order thinking skills, and they will shine.

EFFECTIVE FIRST STEPS TO HELP YOUR CHILD

If any of these scenarios have played out with your child, an effective first step is to have your child take a free dyslexia screener. ( readinghorizons.com/dyslexia/dyslexia- resources/dyslexia-test/screener) This informal screening does not provide a diagnosis, but it may assist in identifying common indicators in your child. A significant number of positive responses to the screener might indicate the need for further assessment. One thing I particularly like about this screener is that, for each question, it gives you the option to view research explaining why the question is being asked so you can better understand what dyslexia is.

You should also voice your concerns to your child's teacher. They'll give you great insight into your child's reading abilities and keep an eye out for work avoidance and phonemic awareness abilities. Work with the teacher to see how you can utilize their teachings and, most important, incorporate your child's strengths at home and in the classroom. Children with dyslexia have heaps of talents, and often develop advanced reasoning and problem-solving skills.

Parents should be aware, though, that through no fault of their own, many educators are not allowed to use the word "dyslexia" ( dyslexia.yale.edu/dyslexia/declaration- of-rights/use-the-word-dyslexia/) Some also do not have the proper training to identify and support students with dyslexia. Legislation is making progress on this, but not fast enough.

Being your child's advocate will ensure that your child's needs are met. You can start by picking up the books Overcoming Dyslexia by Sally Shaywitz and The Dyslexic Advantage by Brock Eide, M.D., M.A. and Fernette Eide, M.D. These are the books that made me connect the dots and realize that I don't just have a learning disability – I have dyslexia. Shaywitz's work confirmed what I had noticed in myself through the years. Multi-sensory, phonics-based literacy programs are the most effective way students with dyslexia learn to read. Once I had access to this type of instruction, I was able to fill gaps in my learning that I had been longing for my whole life.

When I found out I had a learning disability, I was filled with shame. I had gone on so long wondering what was "wrong" with me. By educating myself and sharing my story, I've realized that dyslexia doesn't have to be seen as a bad, scary thing – it's just a challenge to work through. It also happens to comes with many gifts.

Support your struggling reader by opening the dialogue and providing reassurance and tools. This will allow them to develop the confidence that's essential to hone their skills and work through problems in an effective, positive way. •

ABOUT THE AUTHOR:

Jillian Rose Periolat Kaster is an implementation coach for Reading Horizons and a former kindergarten teacher of 10 years. She can be reached at jillian.kaster@readinghorizons.com

RESOURCES FOR RARE DISEASES

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BY LINDSEY CUNDIFF

My name is Lindsey and I am the Associate Director of Patient Engagement at the EveryLife Foundation for Rare Diseases, an organization I joined in August 2016.

joined in August 2016. A bout three weeks after my official start date, and after several years of the diagnostic journey, my father was diagnosed with a disease called Myasthenia Gravis. Myasthenia Gravis (MG) is a chronic autoimmune neuromuscular rare disease that is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. It affects roughly 36,000 individuals in the US and is considered a rare disease. Coincidence? Not so much when you look at the facts of rare disease:

I get it, these stats either pull at your heartstrings because you have a personal connection, so it is relatable – or it flows right through you because it feels like it doesn't affect you. I'm telling you, it does. If the name of a person living with a rare disease does not immediately come to mind, chances are you have crossed paths with someone in the rare disease community at some point in your lifetime. Or, you can relate to some of the challenges the community faces because you know someone who is living with a chronic illness, or is an individual with a disability.

We all are connected through the complications that life throws at us. It's up to each of us to come up with ways to make these challenges a bit easier for each other. One of the best ways I have found to make my every day a little bit easier is through advocacy. •

ABOUT THE AUTHOR:

Lindsey Cundiff is Associate Director of Patient Engagement, EveryLifeFoundation.org based in Washington, D.C.

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RARE SPIRIT: (Opposite page) The author with parents Richard and Susan Cundiff, advocates, patient and caregivers for Myasthenia Gravis; (Above, left to right) Tracy VanHoutan, parent advocate for Batten's Disease on Capitol Hill; Becky Abbott, Congressman Butterfield, Aidan Abbott, Thomas Abbott, and little brother Ryder Abbott at the 2019 Caucus Briefing during Rare Disease Week on Capitol Hill; and 2018 Rare Artist Awardee Michaela Oteri.

RARE FORM : RESOURCES FOR RARE DISEASES

EVERYLIFE FOUNDATION FOR RARE DISEASES A patient organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science driven public policy. We provide training, education, resources, and opportunities for all members of the rare disease community. Several of the EveryLife programs are highlighted below. For a full scope of resources available at EveryLife, please visit: everylifefoundation.org Email: info@everylifefoundation.org Phone: 202-697-RARE (7273)

RARE DISEASE LEGISLATIVE ADVOCATES (RDLA) Designed to support the advocacy of all rare disease patients and organizations. We provide free resources, tools and events for patients, caregivers and organizations. RLDA is your advocacy partner! • Action Alerts • Congressional Scorecards • Online Advocacy Tools • One-on-One Policy Consulting • Monthly Conference Calls/Webinars • Advocacy Events rareadvocates.org Direct Contact: RLDA Director Shannon Von Felden Email: svonfelden@everylifefoundation.org

RARE DISEASE WEEK ON CAPITOL HILL Brings rare disease advocates from across the country together to learn about federal legislative issues, meet other advocates and share their unique stories with legislators. FREE events throughout the week offer patients, caregivers and family members the opportunity to engage with the community, join forces and drive change. • Rare Disease Congressional Caucus Briefing • Hill Day • Group Photo on Capitol Hill • Legislative Conference • Documentary Screening and Cocktail Reception • Lobby Day Breakfast • Young Adults Meet-Up • Rare Artist Reception • Rare Disease Day at NIH *RDLA does provide Travel Stipends for advocates who need a little extra financial support (See website for application details). rareadvocates.org/rdw Direct Contact: RLDA Director Shannon Von Felden Email: svonfelden@everylifefoundation.org

RARE ARTIST RARE DISEASE LEGISLATIVE ADVOCATES (RDLA) Designed to support the advocacy of all rare disease patients and organizations. We provide free resources, tools and events for patients, caregivers and organizations. RLDA is your advocacy partner! • Action Alerts • Congressional Scorecards • Online Advocacy Tools • One-on-One Policy Consulting • Monthly Conference Calls/Webinars • Advocacy Events rareadvocates.org Direct Contact: RLDA Director Shannon Von Felden Email: svonfelden@everylifefoundation.org Established to exhibit the unique gifts of individuals affected by rare diseases and to promote the expression of their stories through art. Through its online gallery, the program provides a free, virtual space where "rare artists" can express themselves and submit their work for public viewing. Awardees of the annual Rare Artist Contest are presented with prizes and invited to speak during Rare Disease Week on Capitol Hill. Additionally, their artwork is showcased throughout the year at various patient and industry conferences. rareartist.org Direct Contact: Program Curator Lindsey Cundiff Email: lcundiff@everylifefoundation.org

THE YOUNG ADULT REPRESENTATIVES OF RDLA (YARR) A group of highly motivated 16-30 year olds from the rare disease community, YARR instills confidence in the next generation of rare disease advocates and provides support in their advocacy journey, especially during their transition from childhood to adulthood. The group hopes to have representation in each state and is always looking for more young adults who are passionate about having an impact on public policy. everylifefoundation.org/young-adult-representatives Direct Contact: Program Curator Lindsey Cundiff Email: lcundiff@everylifefoundation.org

TREATMENT TECHNIQUES FOR PROPER AUDITORY AND VESTIBULAR FUNCTION

This article seeks to help the parent or caregiver recognize the importance of treatment techniques that emphasize proper auditory and vestibular function, the goals it can help to accomplish, and if it is a method your child's therapist is using.

BY ROBIN ABBOTT, MS, OTR/L

Almost all speech-language pathologists, physical therapists and occupational therapists (SLPs, PTs and OTs) have graduate degrees, thus it would be easy to assume they are trained uniformly within their disciplines. There is such a diverse field of practice for SLPs, PTs and OTs, that it is impossible for a few years of education to encompass every area of practice. Thus, many daily-use, clinical skills are developed through professional workshops and classes, collectively referred to as "continuing education," in which a practitioner can focus more precisely on a specific client population and their needs.

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But all continuing education is not created equal. There is no governing body that indicates to therapists which classes might give them the most benefit for their clients; the most "bang for their buck," as it were. There is one vein of continuing education that is particularly useful among the pediatric population, because it addresses the central systems on which further skills and senses develop. Those central systems are housed in the inner ear; the auditory and vestibular systems. These systems make the inner ear the center of our awareness of ourselves and the world around us.

Commercially-available programs with names like Integrated Listening, the Listening Program, Therapeutic Listening or Bal-avis-x are all predicated on the similar methods regarding rehabilitation of the inner ear. Each of these programs, and others like them, has a slightly different focus. Some concentrate on rehabilitation of the auditory system, some on the vestibular system, some do both. Because of the variety of continuing education available, your child's therapists may not have been exposed to these treatment methods and the ideas on which they are based. The focus of this article is for you, the parent or caregiver, to be able to recognize the importance of this type of therapy, the goals it can help to accomplish, and if it is a method your child's therapist is using. You may decide to seek out a professional that uses treatment techniques that emphasize proper auditory and vestibular function.

The Glue

The simple act of tying one's shoes involves the requisite skills of attention, visual control, finger isolation, fine motor control, reach and grasp, ability to sequence, an understanding of perspective—and finally, the ability to evaluate success and learn from failure. While an OT may work on all these individual skills through games, drills or crafts, the "glue" that ties them all together—that allows a child to become someone who ties their own shoes—is an awareness of the goal and a plan regarding how to get there. Knowing where one is in space, within the sequence of an activity, and what comes next, is a very complicated cognitive process that depends on the child being able to create a "mental map" of their world. Creating a mental map is done through a cooperation of vestibular and auditory function. The vestibular system senses stillness and movement, giving us knowledge of where we are in a space, and the auditory system gives us an image of the size, shape and content of the space around us. These two informational streams allow our brain and body to plan our actions within the world, much as the GPS in your phone can tell you how to get to a destination and what is nearby. For your GPS to give you the information you seek, you must first tell it where you are and where you want to go. The auditory system informs your brain about where you are, and the vestibular system, in its ability to help predict the consequences of physical action, plans where you want to go. With these pieces of information, the brain and body execute your will.

It's possible that information from these systems may not be reliable for your child. There are variations from the normal course of development that can affect the accuracy and dependability of these systems. In my practice I see many children with a history of prematurity, repeated ear infections, and chronic allergies, children with no definitive diagnosis, as well as children diagnosed with ADHD, autism or Down syndrome. How these systems become impaired may be a mystery, but addressing them through appropriate treatment can help skills learned during therapy become more easily integrated into a child's daily activity.

Vestibular and Auditory Information Build Capacity to Learn

Capacity to Learn The vestibular system is composed of specially-shaped, fluid-filled chambers that sense movement and stillness of the body. The information it provides about movement does not depend on information from muscles, joints or vision. The sensations provided by the body and eyes are not as accurate, nor do they allow for as rapid a response in dangerous situations, like tripping and falling, as the vestibular system does.

Imagine we were dependent on only our eyes to sense movement or stillness. That may work, as a lot of our navigation through our world is done visually. However, that wouldn't give us many opportunities to use our eyes for other purposes. Because the vestibular system provides independent information about our movement, we can choose to keep our eyes on a single point as we move through space. This is imperative for the newborn, who learns to lock his eyes on an object as he is carried, to learn that the same object can look different based on where he is in the space around it. Because a chair is still a chair from any perspective, it can develop its definition as "that thing people sit on" no matter the shape it takes in the baby's vision.

The perceptual anchor provided by the vestibular system also allows a child to send her eyes from place to place at will. This most often occurs in response to a sound within the environment. The ears' ability to locate a sound within the 360-degree surround of the head is very accurate. But it can become much less accurate if a child does not have an accurate sense of where they are in a given situation. If a child's vestibular system is not providing a sense location, their brain might be depending on visual information to stay oriented. This limits their ability to move their eyes at will:

As the vestibular system gives a child singular perspective on the world, the ability to understand and direct their attention is primarily developed by the auditory system. For example, the most rudimentary way in which we locate sounds around us is by using our binaural hearing. When a sound travels to us from our right, the sound waves "hit" our right ear, then our left. Thus, if the sound triggers our attention, we turn to the right to attend to it. In early childhood, this allows for head, neck and trunk muscle development, as well further refinement of sound localization.

The process of accurately locating sound within an environment is complex, but when that process functions well, it allows a child to focus on a speaker's face; to associate facial expression with emotional content of speech, and view the lips and teeth of the speaker to learn how those sounds were made. In this way, accurate eye movements, as developed through accurate vestibular sense and sound localization, directly impact speech and communication for a young child.

A child's ability to hear the sound content within speech also directly affects their ability to communicate. The content of speech is much more than the words chosen by the speaker. Although word-choice is an integral part of speech communication, a child most often learns the meaning of words based on how they are spoken.

Vocal inflection is just as important as word-choice. For example, you can warn someone about impending danger with any number of phrases, but chances are you will yell or speak strongly to communicate the immediacy of the situation, regardless of the words you use. Conversely, humor and sarcasm are often communicated using the exact same wording as the lack of humor and sarcasm; it's one's tone of voice that communicates the meaning.

The ability to hear these subtle differences in communication is dependent on the proper function of two muscles in the middle ear, the tensor tympani and the stapedius muscles. The tensor tympani's role is to protect our hearing from potential damage caused by excessively loud sounds, such as the sound of our own voice when we speak. If the tensor tympani is not engaging when appropriate, a child might over-react to noises, even those tolerable to others. In this situation, they are not able to engage with the auditory world around them, thus missing opportunities to develop speech and communication.

The Stapedius

The Stapedius The second listening muscle is the stapedius. It allows the ear to focus on certain sounds within the environment; particularly speech. With a minimally functioning stapedius, a child may hear words with accuracy, but a fully-functioning stapedius can hear the subtle differences in vocal inflection that give rise to rich language. For example, when a child is exhibiting a behavior that is not dangerous or strictly off-limits, but is irritating, a parent may say the child's name sternly. If the child cannot hear the irritation in a parent's voice, they remain oblivious to the parent's impending anger. Thus, when the child finally "goes too far," they are truly surprised by the parent's anger. That surprise seems unfair to the child, and sometimes a tantrum ensues. The situation is most unfortunate, because given a functional ability to hear vocal intonation, the child may have had two or three opportunities to empathize with their parents, correct their behavior and "get it right."

The ability to hear what another person is thinking through the tones of their voice is an essential skill for developing both empathy and the idea that other people are separate creatures with separate ideas. If dinner is served and the platter of broccoli is uncovered, hearing a sibling say "oh, great!" allows a child to develop the idea that, although they may not like broccoli, their sister does. Conversely, if sister says, "oh great," then a child has a chance to understand sarcasm and the idea that dislike of broccoli is something they have in common.

Another cognitive skill developed through our sense of hearing is an awareness of time and sequencing. Listening is an event that takes place over a period of time. For example, if I say the word "pitch," my mouth produces three distinct sounds. The /p/ sound, /i/ sound, and /tch/ sound each create a separate neural impulse from the ear to the brain. The brain has to take these three distinct impulses and order them correctly to hear the word "pitch," as opposed to "chip," before its meaning can be understood. In addition, the brain must also sequence the word into the greater context of the situation or the sentence; "pitch" could mean a sound, or it could mean the act of throwing a ball. The word's placement in the scenario and within the sentence are sequencing factors the brain must analyze to understand language. When a child learns language, they are also learning the fundamental principles of timing, sequencing, and patterns.

What to Look For

It may be that your child's therapist is already using techniques that address these systems. If your child is using specialized headphones and sounds, or music prescribed by his or her therapist, either during treatment sessions or at home on a schedule, it's very likely they are receiving some form of auditory therapy. You may want to ask what program your child is using and spend some time on the internet researching on your own. You can also ask your child's therapist what they are listening to and what it is meant to work on, and how you can recognize progress based on spe cific changes.

For example, when I prescribe an album intended to enhance a child's eye-movement accuracy, I'd expect behaviors such as more eye contact, longer visual attention to tasks, and a calmer demeanor as a child begins to trust their ability to react to a change in the environment, if they need to. I tell the parents this at the outset, and state that if we haven't seen some improvement in this vein within two weeks, that I appreciate their feedback to allow me to make changes as necessary.

Vestibular treatment is also fairly easy to recognize, as it involves some combination of movement and stillness. However, your therapist may have to explain precisely what skills are being addressed, since it so often looks like play (as it should!). During some, if not all, therapy sessions, there should be an opportunity for a child to participate in three types of movement, as their abilities and goals dictate:

1. Movement the child controls, such as running, sliding, crawling, etc. This allows for the element of fun that a child so often look forward to.

2. Movement the child cannot control. Most commonly, this movement is provided in the form of a swing, but it might also be through falling into a crash pad, climbing through Lycra sheets or being pushed on a scooter board. These activities allow a child to develop the ability to predict movement and react to it.

3. Stationary activities. This may be as brief as holding still during an obstacle course to complete a fine-motor task, or as long as being seated for a game, based on the child's skills level and goals.

Having these three activities in each treatment session, in a balance that is appropriate for your child, offers the appropriate opportunities for him or her to develop specific vestibularly-dependent skills. It is more than appropriate to ask your child's therapist why a specific activity was chosen and what skill it was chosen to develop.

By addressing the vestibular and auditory systems as necessary for each child, therapists can help them develop their own "mental maps" for navigation of their world in a way that makes sense to them. This is the glue that will hold together the specific skills involved daily life, from speaking, to tying shoes, to reading and writing.•

ABOUT THE AUTHOR:

Robin Abbott, MS, OTR/L is an occupational therapist with 12 years' experience working with families and children with autism, ADHD, SPD and Down syndrome. Her practice is a theoretically-based, structured framework of auditory and vestibular activities to promote better sensory integration. She currently works as a Rehab Liaison in Davenport, IA. She can be reached through her website, rabbottwriter.com.