The prospect of adulthood is particularly complex for individuals affected by developmental disability, their families, and the people who care about them. Like their peers, they have accumulated two decades’ worth of experiences, their bodies have matured; and they are considered to be autonomous citizens with rights and responsibilities governed by the law of the land. Unlike their peers, they have not outgrown significant reliance on others to navigate the demands of adult independence – accessing health care, productive engagement and gainful employment, money management, self-direction – due to a host of limitations that impact the ability to take care of oneself.

Today’s adult service delivery system for people with developmental disabilities strives to honor their status as full-fledged citizens who have reached the age of majority. They are “grown-ups” who want to make lifestyle choices in keeping with their individual preferences and desire for independence. To this author’s mind, there is no more noble task than supporting this basic desire. Associated challenges are numerous and wide-ranging—making for an extraordinarily stimulating mission. Professionals and parents, sometimes of the same mind, sometimes with opposing views, are presented with ongoing issues requiring a delicate weighing of protective oversight vs. dignity of risk in the essential effort to assist an especially vulnerable human being in living a rich and self-actualized life.

Family members are particularly challenged to make identity adjustments, both in terms of their grown child and their own role in their grown child’s life. It is sufficiently daunting to grant autonomy to any human being who you have fed, clothed, consoled, counseled, cajoled, disciplined, cheered, and housed for twenty years. How do you “let go” when that person is someone who rarely makes eye contact, makes loud, odd vocalizations and flaps their hands every time they change location, and if left to their own devices would eat only pizza, water crackers and grape jelly? How do you switch gears from being that child’s caregiver and protector to that adult’s supporter and advocate?

Professionals, too, are confronted with seemingly dichotomous responsibilities. On one hand, they are charged with insuring the health and safety of every individual for whom they have oversight. This includes folks who want to escape environments that may, for them, be too bright, too noisy, too crowded, or too unfamiliar; who may provoke aggression in others due to a compulsion to repeat the same word, phrase, or snippet of a commercial again and again and again; who may have no awareness of danger. On the other hand, they are trained to enable and honor choice-making; respect preferences; and encourage and promote independence.

I assert a trite but I think true summation: nothing worth doing is ever easy! I am privileged to have come to know many families whose diligent efforts and dedication to bringing their children up to “be all they can be” have resulted in many successes. One young man who comes to mind, who has an intellectual disability in the mild/moderate range and is prone to high anxiety, has successfully learned to use the New York City subway system, is holding 3 part-time jobs, and lives semi-independently in an apartment where he enjoys both privacy and company.

I also have the good fortune of working at an agency with colleagues who thoughtfully toil to do right by the people entrusted to our care, while complying with ever-increasing demands from various authorities for meticulous documentation and budget matters. Individuals who started services with us by attending a school holiday respite program have transitioned to our day habilitation and residential services, followed by service coordinators who strive to insure that outcomes important to the individual are identified, pursued, and achieved. These goals can include being able to hand a cashier the right amount of money to purchase a favorite CD; cooking a favorite meal from their country of origin; or simply selecting and wearing fabrics that maximizes their comfort because they are highly sensitive.

When working with people who have very limited communication skills and do not initiate activities or interactions, staff need to be extremely attentive to body language and facial expressions, and provide a wide variety of activities to discover what interests and pleases the individual.

Access to these services is quite different than accessing education services, which are mandated by law. Services for adults with developmental disabilities are not entitlements. They must be requested and pursued by the individual and their advocates.

Families should not assume that if their child has been in special education they will automatically be determined to be eligible for adult services. There are very specific documentation requirements and enrollment procedures that must be followed to be able to access services funded through the Office for People with Developmental Disabilities, which contracts with New York’s vast network of non-profit providers.

Every county currently has a local branch of OPWDD called a DDSO (Developmental Disabilities Service Office). DDSO’s have lists of agencies that provide services in their county. In New York City Resources for Children with Special Needs is also an excellent place to learn about agencies and services.

The first thing the parent of a student close to graduating needs to do is find an agency that provides Medicaid Service Coordination, and work with that agency to apply for that service. The DDSO or non-profit providers can make referrals to families for obtaining the right type of evaluations needed to apply for eligibility, which often are not available from school.

Using family support services, such as respite, a social skills program, or parent training – from an agency prior to graduation, is an excellent introduction to services in the adult service delivery system while John or Jane is still a minor.

It happens that New York State’s service delivery system is on the cusp of some major changes. The system will, however, continue to be largely funded by Medicaid. Individuals reaching the age of majority will not have their parent’s income counted toward eligibility, and should be enrolled in Medicaid as soon as they turn 18 if they have not been eligible prior due to family resources. Information about system changes, which will come about due to New York’s application to the 1115 Waiver – is available at OPWDD’s website www.opwdd.ny.gov.

Parent-to-Parent of New York State is another organization that can be contacted for assistance with the transition process. It can be overwhelming to navigate the adult service system and decide which agencies to contact, all while adjusting to your child leaving school – and childhood – behind. Information about Parent-to-Parent can be obtained from their web site www.parenttoparentnys.org.

Early adulthood marks a major transition – a significant milestone that underscores the lifelong nature of developmental disability. Differences between affected individuals and non-disabled peers may have become increasingly evident, and some goals may need to be adjusted. Adulthood may also bring unexpected maturity, improvements in adapting to environmental expectations, and most importantly, ongoing skill development. Today’s adult service system is focused on supporting continued personal growth, respecting individual rights and preferences, and the rewards of contributing toward enriching each person’s quality of life.

Laurie is an educational therapist who practices in Midwood, Brooklyn and makes home visits throughout the city. Laurie’s background includes instructional, behavioral, and rapport building strategies with pre-schoolers with autism; children, teens, and adults with intellectual disabilities and/or autism; school-aged children with reading disabilities; and adults dually diagnosed with intellectual disability and behavior disorders. Laurie works to identify the underlying causes of learning difficulties when developing the best intervention plan to set the student up for success. She can be reached at laurie@brooklynletters.com.

As our children reach school age, some of us come to learn just how challenging exceptionality – regardless of dis/ability – can be to negotiate, both for our children and ourselves. The overwhelming majority of primary and secondary, public and private schools in this country aim straight for the middle of the bell curve of intellectual and social development in both how and what they teach. The student “ideal” upon which most curricula are based is a child who progresses in predictable stages academically (“on grade level”), is well adjusted with peers and teachers, and pursues “age appropriate” interests and relationships. But what about the child who does not conform to these norms? How can we as parents help make sure that an educational system built for the “rule” does not leave our “exceptions” behind?

Most special education experts define “exceptional children” to be those kids whose performance deviates from the norm, either below or above, to such a degree that individualized special education and related services are necessary for them to benefit fully from education. The term is deliberately broad and inclusive: it includes children with learning, emotional, and physical disabilities as well as those whose intellectual gifts or special talents are so superior that they, too, need to have their curriculum and instruction modified in order that they may fulfill their potential. Further complicating this picture and raising the stakes even higher for parents, teachers, and schools, is that exceptional children may — and often do — possess two or more special abilities and/or disabilities.

In general a “special needs” student is one who has a physical, learning, and/or emotional disability that interferes with her education. What does this mean? A child who cannot walk due to a birth defect or injury but who has no cognitive impairment is a “special needs” student in so far as she needs a fully wheel-chair accessible school and, perhaps, a paraprofessional aid to assist her to get around. On the other hand, a child with autism will need specially trained teachers, a modified curriculum, and a variety of related services.

The federal law known as the Individuals with Disabilities Education Act (IDEA), first enacted by Congress as the Education for All Handicapped Children Act in 1975 (and most recently reauthorized in 2004), mandates that all schools receiving public funding must provide all children with disabilities, from age three through 21, “free appropriate public education” in the “least restrictive environment” with the necessary related services (e.g., speech therapy, occupational therapy, physical therapy, counseling, etc.) to allow them to benefit from an education.

Like all individual rights and services guaranteed under federal law, however, it not enough to ask for help. Your child must first be evaluated and certified for an Individualized Education Program (IEP) or an Individualized Family Service Plan (IFSP) if your child is under age three.

Although the IDEA mandates and helps fund educational and related services for children with disabilities, it is up to the states and their local school systems to see that special education is delivered. As there is considerable variation from state-to-state, it is important to consult your state’s Department of Education and your local school district for the specific procedures and regulations that pertain to your child’s school. In New York State it is the Department of Education’s Office of Special Education that oversees the implementation of federal and State laws and policy for students with disabilities. In New York City, the Department of Education’s Office Division of Students with Disabilities and English Language Learners is charged with keeping schools and families of students with disabilities informed and supported concerning current special education policy and procedures.

The federal government, via IDEA and other legislation, has established and funds a nationwide network of Parent Training and Information Centers whose mandate is to help families of children of all ages (birth through age 26) with all disabilities – physical, cognitive, behavioral, social, and emotional – to, among other services:
• Understand their rights and responsibilities under the IDEA;
• Obtain appropriate services for their children; and
• Resolve disagreements and understand the benefits of alternative methods of dispute resolution.

Advocates for Children, Resources for Children with Special Needs, and Sinergia/Metropolitan Parent Center are the federally designated parent centers serving New York City.

Regardless of regulatory differences among states, I encourage both “newbie” and veteran parents of children with disabilities alike to keep current on the fundamentals of the special education evaluation and certification process. To more fully acquaint yourself with special education policy and procedures in New York City I recommend Advocates for Children’s Short Guide to Special Education and other publications. To know the following core operating principals will get first-timers pointed in the right direction, and save the rest of us more than a little heartache and frustration.

• You have a right to get your child tested and evaluated — at the public’s expense — for special education and related services even if his teacher or school’s principal does not feel it is necessary.
• If you feel that your child’s school lacks the resources or expertise to conduct a thorough evaluation, you have the right to request that it be either conducted at the school-district level or in the private sector, if the school district also lacks appropriate expertise, at public expense.
• Once the initial evaluation has been completed, you must be invited in writing to attend a conference concerning the school or district-based assessment team’s conclusions and recommendations. Attend this meeting! Bring someone you trust to this meeting. This person need not be an educator or lawyer, just someone who whom you believe has the knowledge and skills to help you advocate for your child.
• If your child’s school or school district does not have the resources to provide IEP/IFSP-mandated related services within the school (e.g., occupational therapy, physical therapy, etc.), by law these services must still be provided at public expense by a private provider.

Put all your requests for testing and evaluation for special education and/or related services in writing to the appropriate school and/or district special education administrator. By sending a letter (via certified mail is best) you will not only be able to track accurately your efforts on behalf of your child but will put her school district “on notice.” The school district must respond to you within a very limited timeframe (usually 60 days for an initial request and 30 days once your child has already been certified for an IEP).

Once your child has been certified for special education services, by law there must be an annual review of her IEP/IFSP mandated program placement, educational goals and related services. Again you must be invited to the annual review conference in writing. Again, you may bring an advocate with you. Before attending this conference, review all report cards and other written communications sent home by the teacher and other service providers. The more current you keep with your child’s progress at school, the better you can advocate at the annual conference and throughout the year with her teacher and related service providers.

Having undergone the initial special education evaluation and certification process with my own son who has dyslexia and associated learning disabilities more than six years ago, I wish I could say that once you’ve gotten to the first annual review you can sit back, breathe a big sigh of relief, and return to family life as usual. Alas, by this point, you have successfully navigated only the tip of the iceberg! The good news is you have gained the fundamentals to explore what lies below the surface and chart your child’s educational course in the years ahead. And, of course, you’ve become an important ally and resource for other parents just setting sail.

Whatever their specific needs, our exceptional children need exceptionally committed parents and other adults in their lives to help them reach their educational and social potential. Needless to say, ours is a long and winding road, often very difficult to navigate alone, especially so when we may have more than one job to juggle as well as other kids and needy family members to care for. The following are my seven basic “rules of thumb” for effective parent advocacy – which has kept this special ed mama centered and sane for many years!

• Trust that you know your child best. Never accept on face value that you don’t have the expertise or experience to find out and do what is best for your exceptional child.
• Seek the counsel of other parents who have been down the same road before you.
• Don’t fear labels: “special needs” and “gifted and talented” are just short hand for paths to getting what your child needs.
• Emphasize collaboration over confrontation with your child’s teachers, related service providers, and school administrators.
• Know your rights under the law.
• Not every one of your child’s needs can be addressed all the time — not at school, and not at home. Pick your battles well and always assess the personal, family, and public resources at your disposal at any given time.
• Talk often with your child! Be honest and straightforward about what you are doing on her behalf and listen to her own desires, fears, and hopes.

Remember that it is hard-wired into us as parents to consider our children exceptional – unique, one-of-a-kind, irreplaceable – regardless of dis/ability. This way of thinking is a cornerstone of our humanity. It is also what makes us our children’s first and most important teachers and advocates.

As a Special Education Parent Advocate, Patricia Connelly counsels, assists, coaches, and advocates on behalf of families of children with disabilities, as they navigate the often muddy and choppy waters of the special education “system”—regardless of educational setting or disability classification—from initial evaluation and certification for services to subsequent annual and triennial IEP (Individualized Education Program) conferences and through every critical period of transition. Patricia’s practice provides “soup to nuts” services, including consultations via telephone and in-person; review of IEP and relevant evaluations and other documents; attendance and support at school and program-related meetings; research needed to support the child’s needs; correspondence with schools, district, city/state agencies and others as needed; as well as preparation for and attendance at mediation and/or due process hearings. Patricia can be contacted at patricia@brooklynletters.com.

My name is Meghan Hinman, and I am a music psychotherapist. I’m very excited to be joining the Brooklyn Letters team and to be contributing my first blog entry. Music therapy is widely misunderstood, and I thought the best way to start writing about it here would be to address some of the typical questions and misconceptions about my field that tend to come up.

For most people, the idea of music being therapeutic seems pretty logical. But did you know that music therapists are highly educated professionals with specialized, standardized training? Music therapists in New York state are licensed psychotherapists (meaning you can go see one, just as you might go see a psychologist for private psychotherapy, and your insurance company might pay for it). The potential benefits of this modality are much greater than most people realize.

Misconception #1: A music therapist is a person who shows up with an iPod and tells you what songs you should listen to.
This couldn’t be farther from the truth! Music therapists are musicians (required to be proficient on piano, guitar, and voice, plus music theory, sight-singing, conducting…) who usually utilize live, active music making with their clients. When recorded music is used (which isn’t typical), a music therapy session is still grounded in the interaction between therapist and client, and encapsulates much more than just listening to songs.

Misconception #2: You have to be a musician to benefit from music therapy.
Music therapy is not about performing or having a certain level of musicianship skills– it is simply about being human. In music psychotherapy sessions, there is often a focus on talk therapy or therapeutic play and sometimes very little actual music is used.

Misconception #3: Music therapy can be facilitated by anyone.
It’s true that everyone is capable of using music in a therapeutic way, but music therapy is a career field that has standardized training, just like medicine, law, social work, or any other professional career. A music therapist is someone who has earned a four-year bachelors degree or two-year masters degree (or both!) from a music therapy university program; there are more than 70 schools around the United States with such programs. There are other practitioners who have been trained in using music to help people (music practitioners, harp therapists, music thanatologists), and they can do wonderful things with music, but only music therapy requires university-level training that includes psychology, human development, and the therapeutic use of music. In New York state, the LCAT (licensed creative arts therapist) license protects consumers by guaranteeing that music therapy licensees are highly trained and competent to practice psychotherapy.

Misconception #4: Music therapy is a new thing.
The idea of music as a tool for healing is as old as music itself– however, music therapy as a modern career field actually began after the second World War, serving veterans for whom talk therapy and other forms of rehabilitation just weren’t enough. The first music therapy university training program was founded in the midwest in the 1940’s, and the first national governing body for music therapists was founded in 1950.

Misconception #5: Music therapy is fun, but not useful for addressing serious issues.
Sometimes it’s true that participating in music therapy can be fun– but the word “fun” is somewhat misleading. The inherent qualities of music, including its structure, predictability, familiarity, the way we feel it in our bodies, and its potential for voicing a range of emotions, are what helps to make “serious issues” easier to tackle through and with the music than they might be otherwise. That’s why a child who has never been able to say “I’m sad that my parents got divorced” can sing those same words with the support of the music and music therapist. It’s why a teenager who has refused to talk to any therapist before is suddenly opening up around discussions of her favorite music. And it’s why an adult who complains, “I can’t get out of my head” chooses a music psychotherapist to help him investigate his feelings of depression and anxiety.

Misconception #6: Music therapy is only for children.
Music therapy is a wonderful intervention for children, as it easily works hand in hand with play therapy. Play and creativity come naturally to many children, and they lack the inhibitions that adults tend to bring to the table when it comes to the arts. Most children don’t worry about whether they are singing or playing an instrument “right,” they’re just thrilled to be engaging in the process! But music reaches adults too, and powerfully so– just in different ways. Think of how Beethoven, Bernstein, and the Beatles have moved adults and changed the world with their music. Why should such a powerful tool be reserved only for children? Music engages the emotional centers of the brain– the ones that are hard to access through cognitive processes such as talking and analyzing– and this makes it an ideal modality for adults and families, in addition to children, when a psychotherapy intervention is needed. What the actual therapy process looks and feels like in session is very different for children than it is for adults, just like in any psychotherapy modality.

Misconception #7: Music therapy is a new-age therapy.
There are music therapists who would consider themselves part of the new-age movement, but music therapy is a broad field with great variation among its professionals. There are music therapists focused on the neurological and rehabilitative applications of music therapy, on school-based and special education applications, on recreational and activity-therapy related applications, on behavior modification and positive reinforcement applications, and on psychodynamic and emotional applications of music therapy.

Misconception #8: Music therapists are not “real” therapists.
Music therapists are recognized members of interdisciplinary treatment teams in schools and many types of facilities throughout the country and the world. In New York, they are also qualified with the LCAT license to provide private psychotherapy services. If you’re curious, pursue treatment– or just a process of self-discovery– with me or another music psychotherapist. You’ll learn how “real” a therapeutic tool music can be, and the unique therapeutic expertise that music therapists have to offer.

Meghan is a licensed creative arts therapist and a board-certified music therapist with over ten years of experience working with babies, children, adolescents and adults. At her private practice in Brooklyn, she incorporates Depth Psychology, Vocal Psychotherapy and In-Depth Music Therapy to work with children and adults struggling with loss in their lives and with those who are looking for a creative way to understand themselves. Her style of therapy is client-led, and focuses on self-expression through music and/or the creative process. She can be reached at: meghan@brooklynlearning.com or by phone at 646-450-1644. www.brooklynlearning.com