EP's ALL-NEW RESOURCE GUIDE FOR 2020

2020 EP GUIDE NAVIGATING SPECIAL NEEDS RESOURCES

"An observant parent's evidence may be disproved but should never be ignored." ~ Anonymous Lancet (1951), 1, 688.

tips and tools for the employment of adults with disabilities

Everyone is better off when people with disabilities work. The workers themselves have a livelihood as well as a place to contribute and build relationships. Parents, siblings and friends have the opportunity to see their loved one grow and succeed. 

BY ALEXANDRA BAIG, MBA, CFP®

A good friend of mine is a self-advocate – she has blindness – and a very strong advocate for her young adult son who has Down syndrome. She is a professional who has worked for the local ARC as well in other positions reaching out and supporting people with disabilities.

From her multiple perspectives, she is adamant that not only is it important for adults with disabilities to work, but also, it is critical for families to begin to teach work skills from childhood because it is so challenging for adults with disabilities to find employment. She means her advice to encourage the understanding from both the point of view of people with disabilities themselves and also from the point of view of their parents that people with disabilities do have the capacity to work and should be expected to work. "Give your child with a disability the same opportunities as your other children to learn household chores and receive an allowance or another incentive for completing them regularly."

While not every family with which I work started acclimatizing their child with a disability to work by kindergarten, I find that many more families expect work to be a component of their child's adult life that took that perspective, even 15 years ago, when I first started in practice.

Many typically developing youth move naturally into the world of work once they reach early to mid-teens as a way to afford the things they want that their parents cannot or will not buy for them. Youth with disabilities can do likewise, but they are going to need more involvement by, and support from both their families and their school. The Individuals with Disabilities Education Act (IDEA) requires public schools to provide services specifically designed to help the youth with disabilities to transition to adult life at a minimum from the child's age 16, to the date they age of out of school. Many schools begin earlier. In my home state of Illinois, transition starts at 14 ½.

The United States Department of Education Office of Special Educations and Rehabilitative Services' Transition Guide (2017, sites.ed.gov/idea/files/postsec- ondary-transition-guide-may-2017.pdf) is defined on its own front cover as a guide To Postsecondary Education and Employment (emphasis mine) for Students and Youth with Disabilities. The document mentions employment as a transition goal as early as page 4 where it says:

Whether the student's next step is employment or entering a postsecondary training or an educational program, it is important for students with disabilities to obtain as much work experience as possible to prepare for adult life. The National Collaborative on Workforce and Disability for Youth (NCWD) reports that the value of a work experience, whether paid or unpaid work:

I encourage parents of transition-aged students to arm themselves with this and similar material to support their son's or daughter's right to receive not just "work readiness" instruction in a classroom setting, but actually work experience in a community setting through the school district and with appropriate supports.

collaborative projects

In addition to what schools can provide on their own, some students may have access to collaborative projects between their school and other partners. One such is Project Search, which coordinates and manages year-long practical internship programs around the country in conjunction with local school districts, vocational Rehabilitation offices, agencies that provide employment support services and community employers. You can find out about Project Search sites in your state by looking here: projectsearch.us/find-a-pro- gram. And if your state does not yet have a program, you can find out what it takes to start one here: projectsearch.us/start-a-project- search.

In my work as a special needs financial planner, I find that although many youth with disabilities want to work and their parents likewise want them to work, parents sometimes express concern that too much success at work while in school will preclude their child from qualifying from Social Security cash benefits or, more important, Medicaid, which by way of Medicaid waivers, funds virtually all adult services. I appreciate this concern because eligibility for these benefits does, in fact, hinge very directly on how much the applicant is capable of working.

For adults to meet the Social Security definition of "having a disability," the applicant must have "the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months." SGA, in turn, is defined as the capacity to earn more than $1,260/month or $2,110 for individuals who are blind (For 2020. The SGA thresholds increase slightly most years from the year before.) Even if a student has met the children's criteria for having a disability, s/he will still need to be reapproved at the age of 18, at which point Social Security considers the student to be an adult. Note that Medicaid eligibility often follows directly from Social Security eligibility.

But in a kind of ironic inversion, the fact that your teen can work and earn money is very often exactly what proves they meet the definition of disability. Here's why. When you go with your eighteen-year-old to apply for adult disability benefits, you need to bring compelling evidence not only that your child has a disability and not only that the child is not earning above the SGA threshold, but that your child could not earn above the SGA threshold, even if they were offered a job on the spot. If you do the math, the SGA level is anywhere from 30-40 hours a week of work at a minimum wage job, depending you're your local minimum wage. That is, you need to demonstrate that it is not the local economy or the fact that your child has no work experience that would prevent her/him from working above the SGA level, but rather her/his disability and any related conditions. It is much easier to prove an actual than a hypothetical situation. If your child has worked while at school, whether in a paid or unpaid capacity, you can then use work-related IEP goals and their data, or any written reviews from your child's work supervisor and job coach, to explain clearly and precisely your child's limitations when it comes to work. The very fact that your child requires a job coach, for example, may be evidence that your child could not earn more than the SGA level without that assistance and its associated cost.

earning social security credits

Although volunteer work and work for which your child receives a stipend through the school district are just as valuable as competitively paid work for building real life experience and for providing evidence to Social Security, there is a distinct advantage to having your child work as early as possible in a job that provides a standard paycheck through which s/he pays Federal Insurance Contributions Act (FICA) taxes. This is because a person with a disability who works earns Social Security credits just like any other worker.

When your child first applies for Social Security benefits at age 18, s/he will likely have insufficient credits to qualify for Social Security Disability Insurance (SSDI) and will only qualify for Supplemental Security Income (SSI). While SSI and SSDI both provide cash, SSDI has fewer limitations and a key opportunity, which we will discuss below. Your child with a disability can earn one Social Security credit for every $1,410 earned on which s/he pays FICA taxes, up to four credits per calendar year. Although it requires 40 credits to be fully insured for retirement benefits, it can require significantly less credits to become fully insured for disability (SSDI) benefits. A young person who acquires six credits before the age of 24, for example, is fully insured. You can find more details here: ssa.gov/planners/credits.html about how many credits one needs to be fully insured for SSDI at various ages.

If you, or someone in your family or among you friends has a business, it may be possible for your child to be hired in some capacity, even for occasional or seasonal work. If possible, your child should be added to the regular payroll. But even if your child is not paid regular wages from which FICA is deducted, there is a way to help her/him acquire credits if you are determined. If you child is paid a stipend through the school or if s/he can earn cash by doing yard work, dog-walking or babyor pet-sitting for neighbors and you expect this cash to total more than $1,410 within a year, you can take your child to a tax preparer and help her/him to file a 1040 as a sole proprietor with self-employment income. Because your child's earnings will likely be below the Federal and even the state filing thresholds, s/eh will not owe any income taxes but the FICA taxes paid through the return will start accumulating those credits. If you are detail- oriented, you can even submit estimated taxes on a quarterly basis.

Even though the work that your young adult or adult child with a disability performs will not necessarily preclude eligibility for SSI and, in fact, is necessary for your child to be eligible for SSDI, it is important to understand and anticipate the impact of earned income on each benefit. Because SSI is basically welfare, any income the SSI recipient has from another source reduces the amount of SSI s/he receives from the maximum award of $783/month (2020).

Unearned income, such as bank interest, reduces a person's SSI dollar for dollar after the first $20. Earned income, which is of interest to us in this article, reduces a person's SSI by 50 cents on the dollar after the first $65 (or after the first $85, if there is no unearned income in the equation.) Once your child receives either kind of cash disability benefit and is also working and earning, it is imperative that you report those work earnings to Social Security on a monthly basis. Failure to do so may result in an overpayment. Due to processing time, any start, stop, increase or decrease in earned income will be reflected in subsequent month's SSI checks.

SSDI operates differently. It is an "all or nothing" benefit. As long as the person continues to meet the Social Security definition of disability and does not earn countable income above the SGA threshold, s/he can continue to receive her/his entire SSDI amount. In fact, as the person works longer and at higher income levels, the SSDI check will increase. In addition to this, SSDI has another valuable advantage. Once you have received it for 24 months, you become eligible for Medicare.

You might have noticed that I snuck the word "countable" into the above paragraph as a modifier for earned income. This is because Social Security has a number of work incentives that can reduce the amount of income that the agency counts when considering whether a person with a disability is eligible for benefits at all and, if eligible for SSI, how much. One way to reduce countable income is to claim Impairment Related Work Expenses (IRWE). If the worker with a disability has items or services that are needed because of the disability or related conditions AND that are needed for the person to work AND that are paid for out of pocket and not by Medicaid, Medicare or some other insurance, the person can seek to have the expenses for the items or services approved as IRWE.

If, for example, your child needs to see a physical therapist regularly to maintain her/his capacity to work and s/he pays for all or part of those therapy sessions out-of-pocket, those costs can be IRWE. If your child needs a mobility aid or assistive technology to communicate, the cost or those items can be IRWE. If your child has a service animal, all the costs associated with that animal can be IRWE. Once the IRWE are approved, they can be used to reduce monthly countable income in a manner analogous to how itemized deductions can reduce taxable income.

claiming employer subsidy

Another way to reduce countable income is to claim employer subsidy. This is a bit more complicated, because it requires the employer to quantify in dollar terms any accommodations the employer has made for your child. Let us suppose that your son or daughter is employed at a small grocery store. Generally, all associates who work there are required to stock and face shelves, clean up any messes, assist customers, work the cash register, bag groceries and collect carts from the parking lot. Let us further suppose that your child can do all aspects of the job except work the cash register. The manager agrees to accommodate this. Your child will not be required to work the register. This is a kind of subsidy if the manager pays your child the same rate as a coworker who can do all aspects of the job.

Or suppose your child needs additional breaks because s/he gets tired more easily or has sensory issues. If the employer pays your child the same as coworkers but allows you child to take those addition breaks, that is a subsidy. If the employer is willing to quantify this in writing, you can request that Social Security exclude the value of the subsidy from countable income.

plan to achieve self support (pass) 

A third way to reduce countable income is to create a Plan to Achieve Self Support (PASS). If you child has a work goal and requires financial savings and expenditure to reach that work goal, a PASS can be useful. Suppose, for example, that your child wants to attend community college to earn a technical certificate of some kind, and that with that certificate, you child is expected to earn higher wages. You can then use Social Security's PASS application form ssa.gov/forms/ssa-545.html to detail the steps your child needs to take to obtain the certificate, how long they will take to complete, and how much each will cost. If the plan is accepted, money your child saves to accomplish the plan will not be counted as income (either earned or unearned) and, as an added bonus, will not count towards the $2,000 asset limit required to maintain SSI and Medicaid eligibility. Of course, for this to work, the money saved must be used only to implement the PASS.

other work incentives

In addition to those that can be used to reduce countable income, there are other Work Incentives that allow people with disabilities to try work without worrying that they are going to lose forever their benefits. This is especially true for SSDI, where there is an extended, multi-step process for going of the benefits, so that a person can work and earn for months, and even years, before they become ineligible.

Moreover, for both SSI and SSDI, there is "expedited reinstatement" which applies when a person who has worked enough to go off disability benefits is, within five years, unable to sustain that level of work due to the same disability. Various exceptions for workers with disabilities allow them to extend Medicaid (including Medicaid waiver) and Medicare coverage for years, or even indefinitely for no cost, or only a very small premium. The Ticket-to-Work is an entire suite of services that is available to people with disabilities who receive any kind of Social Security cash benefit. These services are designed to support the person to enter the work force or upgrade her/his job skills while managing and maximizing benefits.

Everyone is better off when people with disabilities work. The workers themselves have a livelihood as well as a place to contribute and build relationships. Parents, siblings and friends have the opportunity to see their loved one grow and succeed.

Social Security, Medicare and Medicaid have money coming in as well as going out. This is not to say that it is easy for people with disabilities to gain employment. There are many structural barriers, from stereotypes and biases, to physical accessibility and insufficient transportation. As parents working within these lim itations, you can maximize your child's vocational opportunities by expecting from an early age that the child can and will work – and providing chances for early learning within your home, working with your child's transition team to make employment a priority, and understanding the Work Incentives built in to Social Security Medicaid and Medicare.•

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.

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MATCHING FUTURE HEALTH CARE PROFESSIONALS with FAMILIES OF CHILDREN WITH SPECIAL NEEDS

BY LAUREN AGORATUS, M.A., JEANNETTE MEJIAS AND DEEPA SRINIVASAVARADAN

The Leadership Education in Neurodevelopental and Related Disabilities (LEND) Program is funded by the US Department of Health and Human Services Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB). Usually housed at University Centers of Excellence in Developmental Disabilities (UCEDDs), LEND Programs provide graduate level interdisciplinary training aimed at improving the health of infants, children, and adolescents with disabilities.

The Association of University Centers on Disabilities (AUCD) supports 52 LEND programs located in 44 US states, with an additional six states and three territories reached through program partnerships.

LEND programs prepare trainees from diverse professional disciplines (e.g. medicine, nursing, psychology, dentistry, social work, etc.) to assume leadership roles in their respective fields. A key strategy of LEND programs is to match professionals in training with families to gain a first-hand view of what it is like to raise children with disabilities and special healthcare needs.

HOW IT WORKS

LEND programs are funded for five years at a time through the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act and are administered by the MCHB. The 52 LEND programs across the country help prepare the professional work rce to address the needs of children with autism and other developmental disabilities. More important, LEND also includes family members and people with disabilities as fully participating fellows. These programs increase awareness of developmental disabilities, reduce barriers to screening and diagnosis, and promote culturally and linguistically competent delivery of evidence-based interventions. (Source leader.pubs.asha.org/doi/full/10.1044/leader.AEA.22112017.18

LEADER MAGAZINE COVER

LEADING AND LENDING: Read about developing future pediatric audiology leaders and the LEND experience in ASHA Leader magazine.

NEW JERSEY LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES

One state-specific example of these programs is the NJLEND program, a program of The Boggs Center on Developmental Disabilities, a division of the Department of Pediatrics at Rutgers Robert Wood Johnson Medical School and the state's UCEDD. NJLEND prepares graduate-level health and allied health fellows to provide high-quality, interdisciplinary, family-centered, culturally competent care addressing the complex needs of children with autism, related disabilities and other maternal and child health populations.

The long-term NJLEND training program is delivered across a nine-month academic calendar, and fellows are required to commit at least 300 hours to participation in the Didactic Seminar Series, experiential learning opportunities, leadership development, and clinical training. NJLEND provides trainees with the opportunity to learn from experts in the field, including parents of children with disabilities, and offers support and mentoring by faculty in their respective disciplines. NJLEND provides continuing education to families and practicing MCH professionals, as well as providing technical assistance to state agencies and community programs. The NJLEND program is open to graduate-level students from Rutgers University/Rutgers Biomedical and Health Sciences participating in graduate, doctoral, and postdoctoral programs in dentistry, developmental behavioral pediatrics, genetic counseling, nursing, nutrition, psychology and social work. In addition to these academic disciplines, family members participate as full participants in the program and are considered an NJLEND disci pline. Parents and other family members are encouraged to apply as long-term trainees, and can learn more by visiting: rwjms.rutgers.edu/boggscenter/student/LEND.html.

THE MENTOR FAMILY EXPERIENCE 

Many LEND programs, including NJLEND, include a family matching component as part of the trainee experience. While this can take several forms across the LEND network, NJLEND partners with SPAN Parent Advocacy Network, a family-led one-stop organization in the state, to identify and prepare mentor families from diverse backgrounds. A Family Discipline Coordinator, part of the NJLEND Faculty, then matches trainees with their mentors based on a range of factors, including geographic proximity and trainee interest in a particular age group or disability.

The Mentor Family program provides the opportunity for NJLEND trainees to develop a richer understanding of the challenges and obstacles faced by families of children with special healthcare needs. As part of learning experience, NJLEND trainees share at least two unique experiences with the Mentor Family to which they are assigned. The first experience is a home visit, which allows the trainee to learn about, and from the child and family, in their own environment. A second experience asks the trainee to walk alongside the family during an interaction with a formal service system. This second visit could include a therapy session, school IEP meeting, medical appointment, or interaction with a service system to access needed benefits and supports. Together, these experiences prepare the future health care professionals participating in NJLEND to provide family-centered care to diverse patients and families. For more information on NJLEND's mentor family program, go to spanadvocacy.org/programs/njlend .

ADDITIONAL PARENT-PROFESSIONAL PARTNERSHIPS TO PROVIDE TRAINING TO FUTURE PROFESSIONALS

In addition to the Mentor Family component of the long-term NJLEND clinical leadership training program, The Boggs Center on Developmental Disabilities offers a number of opportunities for parents to serve as educators of future health care professionals. One notable opportunity for families to host medical students comes through the required Seminar on Family-Centered Care and Developmental Disabilities for all 3rd-year medical students at Rutgers Robert Wood Johnson Medical School. This long-standing educational effort incorporates parents both as educators sharing their stories, and matches students with a host family for a home visit. These visits have been credited with helping to shift students' perspective on disabilities, providing context for the lives of patients outside of the clinical setting. The experience also helps students understand the importance of listening, communication, and collaboration with both patient and family to promote optimal health outcomes. The medical students are quite positive towards participating in the seminar. As one student wrote on their evaluation: "I thought it would be a lecture and that it wouldn't stick with me. However, I'll remember this experience forever…"

BENEFITS OF LEND TRAINING

According to the 2018 LEND outcomes study (conducted by the University of WI-Madison, Ohio State University, and University of Pittsburgh), health care providers trained in a LEND program were more likely to work with Maternal and Child Health populations (85% vs. 48% control group) and more likely to work with underserved populations (85% vs. 68% control group) than health care providers who did not train in LEND programs.

Results also indicated that LEND trainees reported working with professionals from two more disciplines than controls, indicating an enhanced interdisciplinary approach to care. More important, LEND trainees also were more likely to engage in leadership activities regarding individuals with developmental disabilities relative to their counterparts who were not trained in a LEND program. For example, LEND trainees were more aware of systemic issues, more engaged in advocacy, and more likely to conduct research.

Another type of experiential learning that might be included as part of LEND training programs is for LEND trainees to have the opportunity to attend the Disability Policy Conference in Washington, DC. This Conference provides two days of panels and seminars where trainees learn about important disability policy issues. The last day of the seminar is Hill Day, where conference attendees visit Capitol Hill to meet with and educate their members of Congress. This is another way that LEND training programs provide real-world, lived experience to enhance the professional preparation of the trainees who participate in these programs. You can access the factsheet at: aucd.org/docs/AUCD%20Outcomes%20Study%20Handout%202018.pdf. The study presentation with complete details can be found at: aucd.org/docs/AUCD%20Outcomes%20Study%20Presentation%202018.pdf

In summary, these results demonstrate the advantages of families partnering with medical professionals in training. The collaboration helps better prepare future healthcare providers to work with individuals with neurological or developmental disabilities. It is a mutually beneficial experience for both parents and providers, and helps make care more family-centered. (Special thanks to Carrie Coffield, Training Director of the NJ LEND Program at The Boggs Center.)•

LEND ME YOUR EARS : NOTABLE QUOTES

"Honestly, I absolutely LOVE the idea of the program! I jumped right on the opportunity to apply once I saw it posted on FB. I feel that there are some things that students just CANNOT learn in a classroom, no matter how great the curriculum is, or how experienced the teacher is. If you want to learn about the needs of our children, the struggles our families face every day, and the challenges that present themselves when we are trying to connect with resources and good providers, the best way to go about it is to work directly with a family and learn firsthand. There is no better education than that! I love our mentee! She came on a day when we were really struggling as a family, and witnessed things that she never would have experienced in a classroom. She was at my house for 4 1/2 hours! We are a very complex family and she was able to witness a very unique way how a single-parent, special needs family manages life. Best education ever :)" — Quote from NJLEND Family Mentor

"I think that the strength of having a Family Mentorship Program is that in addition to the material we are taught at the seminars, it gives us the chance to see some aspects in the lives of a family. The Family Mentorship Program is beneficial because as professionals or future professionals that may work with people with disabilities and their families, it is important to be able to observe it on a more personal level. I think these experiences influence or help shape up the way we may interact in the future with clients." — Quote from NJLEND trainee

"Attending the Disability Policy Conference was a remarkable experience. It provided me the opportunity to advocate on behalf of families to prevent further cuts to Medicaid. My overall LEND experience is helping me partner with providers, strengthen communities, and build capacity in the families and self-advocates I am serving." — Jeannette Mejias NJLEND Family Fellow, 2016-2017

A LENDER BE : LEND PROGRAM RESOURCES

ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES LEND PROGRAMS aucd.org/template/page.cfm?id=473 Find your LEND program: aucd.org/directory/directory.cfm?program=LEND

STATE EXAMPLE  NJ LEND - BOGGS CENTER rwjms.rutgers.edu/boggscenter/student/LEND.html

SPAN PARENT ADVOCACY NETWORK LEND PROGRAM OVERVIEW spanadvocacy.org/programs/njlend

ABOUT THE AUTHORS:

Lauren Agoratus, M.A. is the parent of a young adult with multiple disabilities. Her daughter Stephanie has five life-threatening conditions and autism just to keep it interesting. Lauren serves as the State Coordinator for Family Voices-NJ and as the central/southern coordinator in her state's Family-to-Family Health Information Center. FVNJ and F2FHIC are both housed at the SPAN Parent Advocacy Network (SPAN) at spanadvocacy.org or see program details at spanadvocacy.org/programs/f2f. Jeannette Mejias is the Director of the Special Education Volunteer Advocates, Family Support Integration Specialist with Family-to-Family Health Information Center, and the Statewide Bilingual Trainer for SPAN Parent Advocacy Network. She can be reached at jmejias@spanadvocacy.org. Deepa Srinivasavaradan is a NJLEND Family Fellow. She is also the CDC's "Learn the Signs. Act Early" Ambassador for NJ, and the State Parent Lead for NJ's Early Childhood Initiatives — Help Me Grow, Early Childhood Comprehensive Systems Impact, and Home Visiting CoIIN 2.0 and can be reached at deepas@spanadvocacy.org.

Selecting Summer Programs HOW DO PARENTS CHOOSE? 

BY ERNST VANBERGEIJK, PH.D., M.S.W.

The summer vacation break can seem exceptionally long for both students and parents. Without school, students lose structure, opportunities for learning, and social connections. They can regress in not only their academic skills, but their independent living, vocational, and social skills as well.

What is a parent to do? Some parents are very creative at organizing their own summer programming for their children that includes opportunities for learning, practicing their independent living skills, socializing with friends, and even some vocational skills. However, this takes a great deal of time, effort, and energy. It is a full-time job. Many of us do not have the luxury of being able to dedicate the time to constructing our own summer programming because of full-time employment. Then, how does a parent decide what to do for summer programming?

STEP # 1 BE HONEST WITH YOURSELF.

Ask yourself, do I have the time and energy to devote planning and organizing perhaps up to twelve weeks of social, recreational, learning and vocational activities? Second question to ask yourself is, do I have the desire to spend all day working with my kids in this capacity? The third question to ask when taking this personal inventory is, do I have the resources to pull this off?

When speaking of resources, most people think of financial resources, but those are not the only resources you may need to conduct your own summer programming for your children. The other resources include having the simple bandwidth to get the job done, as well as personal connections with families of other special needs children who have similar interests in engaging in social, learning and recreational activities. If you can identify like-minded families, then you may be able to alternate days of the week where one family is in charge of the programming one day, and another family in charge another day. This takes a high degree of coordination to pull off.

STEP #2 DECIDE THE PURPOSE OF THE SUMMER PROGRAMMING FOR YOUR CHILD, TEEN, OR YOUNG ADULT.

The purpose of the summer programming will guide how to select a summer program that is right for you and your child. If the purpose is to retain academic skills, then having a discussion with your school district as to the appropriateness of summer school (referred to as extended year services, in special education terms) may be in order. If they do not provide those services in district, then the school may be obligated to pay for services out of the district. Consult with a special education advocate or attorney before engaging in this kind of discussion.

If your child is young, then the summer programming may have multiple purposes such as childcare, recreation, social skills practice, and learning a new skill like swimming.

Day camps are an excellent way to fill these kinds of purposes. Schools, munici pal recreation departments, libraries, religious organizations, and social service agencies like the "Y" may offer day camp experiences in your community. Many will even offer transportation out of the city to more rural location nearby. Day camps offer an opportunity for a young child to be autonomous from her parents under the supervision of trusted adults.

Older children may be ready for sleepaway camps. There are thousands of excellent sleepaway camps in North America. Some are for general campers. Others specialize in serving special needs children. Sleepaway camps are the natural progression from day camps. Being able to function away from the family is an important skill a young adult must master. By having an older child go away to camp, they learn how to separate from the family, as well as gain important independent living skills.

These skills are incredibly important especially when an older teen is making the transition to post-secondary education. Students who are successful in these transition to higher education often have spent periods of time away from their families. Many achieve this confidence through going to summer camp annually before going off to college. Summer camps come in a variety of formats and lengths from a few nights or one week to 3, 4, to 8 weeks or more. If the purpose of the summer program is to instill a sense of independence and confidence, then summer camps may be an excellent choice. If the purpose of the summer programming is to gain pre-employment or employment skills, then getting a summer job might be an excellent choice for a teenager with a disability.

Research shows that if a student with a disability had paid employment during high school, then they are more likely to be employed for pay after high school. If the student was a camper at a younger age, some camps employ their former campers as counselors. In fact, many camps have counselor in training programs that help guide older campers into counselor positions. While in high school, the student can maximize her or his chances of being hired by a camp, day-camp, or city recreation program by taking an American Red Cross Life Saving course which entitles the certificate Red Cross. The student not only gets to work as a lifeguard, but teach swimming lessons, and even progress into a leadership role as a waterfront director. This depends upon the student's physical and cognitive capabilities, however. Checking with your city government might be another source of a potential summer job, as well as local offices of the State Office of Vocational Rehabilitative Services.

Ask about any at-risk youth programs and summer employment opportunities. They may even have pre-employment training summer programs that are funded by The Workforce Innovation and Opportunity Act (WIOA). An often-overlooked source of summer jobs is your personal social network. Over 80% of jobs are found through personal connections, not through job postings. Talk to your friends, relatives, fellow parishioners, and neighbors. Ask the local businesses you frequent if they are in need of summer help.

if they are in need of summer help. Summer college-based camps and educational programs have two vastly different purposes. College-based camps are recreational in nature. They then must abide by state regulations that pertain to sleepaway camps. The college-based camps often are run by an outside entity that rents out their facilities, and the college does not get involved into the day to day running of the camp.

Many college-based camps operate along a theme like sports (e.g. baseball, soccer, or football, gymnastics camps) or robotics, art, creative writing, music, or gaming either using video game or role-playing games like Magic the Gathering™. College-based summer educational programs, on the other hand, have vastly different purposes than the college-based summer camps. These programs are designed to do a number of things.

A summer college-based educational program allows the student with disability to form a realistic appraisal of their academic skills and an opportunity to practice his or her self-advocacy skills. Other college-based educational summer programs focus upon the acquisition of pre-employment, social, and independent living skills. These programs will offer internship opportunities, travel training, budget and banking classes, and even cooking classes which are all non-credit bearing.

STEP #3 TALK TO OTHER PARENTS.

Find out what they are planning to do with their sons and daughters over the summer. Get recommendations from them. Other parents are an invaluable source of information. They will give you the unvarnished truth about what their experiences were with a particular summer program. The parents of other children with a disability have no vested interest in whether or not your child joins a particular camp or summer program. Ask them what their son or daughter like best about the program. The flip side of that question, of course, is what did he or she like least about the summer experience. The answers will help you decide if the summer program you had in mind is the best fit for your child.

STEP #4 VISIT THE PROGRAMS.

Ideally, you and your child should do this together while the program is in operation. This means you might have to plan one year in advance to see how the staff and the children, teens or young adults interact. Ask the program directors questions like:

STEP #5 DO YOUR HOMEWORK.

Aside from visiting the programs when they are in operation, conduct a preliminary survey of a wide array of summer options that are available to you. Start with an internet search. Web sites like the American Camping Association ( acacamps.org) can help you find accredited camps of all kinds.

IncludeNYC sponsors New York City's largest fair for young people with disabilities and their families, where over 100 different recreation programs gather. The representatives are from all over the U.S. and Canada; and offer both summer and year-round programs ( includenyc.org/resources/events). This event provides families the opportunity to conduct side-by-side comparisons of various programs.

If the purpose of selecting a summer program is to help the young person transition into post-secondary education, then there are a number of different resources available.

The Musiker Summer Discovery Programs offer pre-college experience for middle and high school students in universities such as University of Michigan, UC Santa Barbara, Georgetown, Cambridge University & London, Yale NUS-Singapore to name a few locations. These programs are not specifically designed for students with disabilities; however, it is incumbent upon the parent to ask if sufficient supports are in place for his or her son or daughter ( summerdiscovery.com).

Looking for post-secondary transition programs and colleges dedicated to teaching individuals with disabilities is another way to find summer programs. Often their websites will list a description of their offerings. Comprehensive listings of these programs are often hard to find. Thinkcollege.net ( thinkcollege.net) is an excellent starting point in identifying colleges that support people with disabilities included in college-based transition programs.

George Washington University's Heath Resource at the National Youth Transitions Center is a clearinghouse on post-secondary education for individuals with disabilities ( heath.gwu.edu). Lesley University Threshold Program published an e-Book entitled Comprehensive Guide to Transition Programs ( lesley.edu/six-qualities). •

ABOUT THE AUTHOR:

Ernst VanBergeijk, Ph.D., M.S.W. is a professor at Lesley University in Cambridge, MA and is the Director of the Threshold Program which is a postsecondary transition program for students with a variety of disabilities. lesley.edu/threshold. He also oversees the Lesley University Threshold Alumni Center which provides life-long support for graduates of the Threshold Program. Beginning Summer 2020 the Threshold Program will be offering a 6-week summer program focusing upon the acquisition of preemployment, independent living and social skills.

EMPLOYMENT RESOURCES FOR PEOPLE WHO ARE BLIND OR VISUALLY IMPAIRED

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BY CHRISTINA LLANES MABALOT

Being employed means being productive, financially secure and fulfilled. However, for persons who are blind or visually impaired, seeking employment may sometimes seem as difficult as driving a vehicle. As one hits the road to find a job, countless hurdles may emerge. Some issues to resolve include tech nology, as well as resources that could make work accessible and adaptive to persons with visual impairment, availability of support, mobility, transportation, the work environment, and so on. The good news is, there are workarounds for almost every obstacle.

For individuals with visual limitations, such as myself, the first barrier one encounters in seeking employment is self-doubt. If you don't have faith in your abilities, nobody will. Remember, you are as capable, competent, and productive as your sighted peers! 

Visually impaired individuals have become successful astronomers, lawyers, judges, professors, engineers, scientists, journalists, customer service representatives, app developers, architects, computer programmers, surgeons, and business owners. The list could go on, but the point is, many visually impaired persons have become what society once thought was impossible for them to become. These successful, visually impaired individuals didn't obtain success through miracles. They are not Superman nor Wonder Woman either; many are regular persons like you and me. I'm sure that they've encountered disappointments and formidable obstacles along the way. Fortunately, it is in the depths of failure and fear, that real courage shines. These notable, visually impaired persons have chosen to develop and keep a heart of courage. Thus, they have turned their vision into reality. You and I can do the same.

DREAM BIG

Visual impairment should not limit your capacity to dream. Remember, no matter what it is you want to accomplish, if you say "I can't," then you won't. Say "I'll try," and you'll be on your way.

EYES ON SUCCESS PODCAST Listening to stories of actual visually impaired go-getters inspires us to dream big. You can find them on this half-hour weekly radio program and podcast that features distinguished visually impaired achievers. eyesonsuccess.net

DISCOVER YOUR PURPOSE

The first step to gainful employment is to search within you what you want to be. As mystical as this may sound, finding your life's purpose is simple. Ask yourself these two questions:

"What do I love to do?" and "Where do I excel?" Make an inventory of your talents and rank them accordingly. Your top-rank talents usually tie in with, or support the work you love to do. Once you find the answers to these questions, determine to devote your 100% to developing your abilities through formal education, training, mentorship, and hard work.

COME OUT

Pursuing a dream lays out difficulties that one could overcome more effectively with the help of a community. Several persons with special needs find themselves on the lonely island of exclusion because they feel that "I am the only one," or "I'm not as good as others." This is especially true among people who've just lost their vision due to ailments or injuries. There is nothing more redeeming than finding one's way out of this segregation into a welcoming community who will be your support system. The sooner you come out to link up and get involved, the more reliable the bridges you can build. I recommend you start your journey with the following organizations:

NATIONAL FEDERATION OF THE BLIND An all-blind organization with chapters and affiliates nationwide. At the NFB, a visually impaired person could find peers, mentors, and role models who share more commonalities than differences with you. Moreover, through their network, the NFB coordinates programs, services, and resources that could set up their members to "live the life they want." nfb.org

AMERICAN COUNCIL OF THE BLIND A national organization of blind, visually impaired, and sighted individuals. Here, a visually impaired person could readily acquire a healthy balance between sighted and visually impaired peers. The ACB provides Information for referrals and directs inquiries to partner organizations. acb.org

EDUCATION MATTERS

The formula to success is no secret – more education, more job opportunities.

Education may include, but is not limited to a college degree, vocational training, a career, or technical education. Your career choice will determine the type of education you'll need. Whether you're born visually impaired or you're someone who just lost vision, whatever training it takes to prepare you for your envisioned career, go for it!

A visually impaired person has the right to equal opportunity to education and employment. The Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, provides this right.

THE AMERICANS WITH DISABILITIES ACT (ADA) Know your rights. adata.org/learn-about-ada

Despite laws that protect our rights, however, there are still several challenges that a person with visual impairment needs to overcome to benefit from education fully. Here are general resources for visually impaired learners and employees:

COMMISSION FOR THE BLIND A government agency that will partner with the school, family, or workplace to provide support. Search online for your specific state's agency.

AMERICAN PRINTING HOUSE FOR THE BLIND (APH) An example of the services they offer is making print accessible for the blind and visually impaired. aph.org or email info@aph.org

Individuals who lose their vision later in life may especially benefit from supports to help them regain their confidence and get back in the workforce. Rehabilitation services offer this assistance. Some examples are daily living skills, orientation and mobility, assistive technology, and other life skills. These are necessary to help the persons who have just become visually impaired bounce back to productivity. I recommend taking rehabilitation courses before deciding your next step when experiencing vision loss. Search for the agency that offers rehabilitation services that meet your specific needs from the following:

LIVING WELL WITH LOW VISION Provides a database of information and network for people who are losing their vision. lowvision.preventblindness.org

FUTURE IN SIGHT Focuses on areas that enhance independent living, such as cooking, banking, personal grooming, and household management. futureinsight.org/services/adult-services/reha- bilitation-therapy

VISION AWARE Sometimes, it is much easier for people going through vision loss to stay in their current job and adapt to the present work situation through technology. Most employers would rather keep their valued staff than hire new people. Work with your boss to identify challenges and to set up accessibility components in the workplace. visionaware.org/info/working-life/talking-to-your- employer/15

If it is not feasible to keep your current job, there are still options. Consider going back to school or taking vocational training courses to be eligible for other employment opportunities. Search the resources listed above and explore resources to help you. visionaware.org/info/working-life/training- resources/12

If, after weighing all your options, you are inclined to take early retirement or apply for Social Security Disability Insurance benefits (SSDI), or Supplemental Security Income (SSI), you can get more information here:

DISABILITY-BENEFITS-HELP disability-benefits-help.org

I was a college student when I realized that my vision was quickly deteriorating. At the crossroads between denial of my forthcoming blindness and taking action, I searched for a self-help resource that would keep me anonymous. I found the Hadley Institute for the Blind and Visually Impaired, through which I studied Braille and other correspondence courses that helped me adjust to and embrace my disability. If you're like me, or someone motivated and would like to earn continuing education credits for a work promotion – or if you're simply a fantastic self-starter, visit:

HADLEY hadley.edu

SEEKING TRADITIONAL EMPLOYMENT

As soon as you are eligible for work, the following may prove helpful for searching jobs that match your qualifications.

NFB-NEWSLINE A free audio news service that offers access to numerous publications, including multiple job listings. nfb.org/programs-services/nfb-newsline

AMERICAN COUNCIL OF THE BLIND Provides a range of job opportunities and other employment-related information. acb.org/jobs

AMERICAN PRINTING HOUSE FOR THE BLIND (APH) A one-stop site for all your needs. aph.org/thriving-with-vision-loss-introducing-the- aph-connectcenter/

IFB SOLUTIONS Provides opportunities for people who are blind or visually impaired in need of training, employment and services. We believe all people who are blind or visually impaired have the right to succeed in every area of life. ifbsolutions.org

LC INDUSTRIES Operating under the auspices of the AbilityOne program, LCI has grown and diversified for over 75 years to become one of the largest employers of people who are blind in the US. Through the AbilityOne program, LCI has maintained a longstanding, mutually-beneficial relationship with the federal government. By manufacturing over 400 products on the federal procurement list, LCI provides legally blind individuals with meaningful employment opportunities. lcidistribution.com/about-lc-industries

INDEED.COM Includes a section for people with visual impairments indeed.com/q-The-Visually-Impaired-jobs.html

AMERICAN FOUNDATION FOR THE BLIND Connect with the accessibility consulting team afb.org

HIREPOTENTIAL Provides expertise and service solutions in navigating the complexities of disability compliance and inclusion. hirepotential.com

ARE YOU PLANNING TO START A BUSINESS?

I believe that starting your own business is your best bet for independence. Owning your business means that you're working for something you enjoy, believe in, and have created yourself. Additionally, running your own business will give you the freedom of time, as well as allow you to be your own boss. You could sell products or services. If you want to sell a product, think of something that isn't readily available in the market. Start by thinking of your own need for a commodity that other people may want to purchase. You could even buy ready-made goods and modify or customize them with your brand, then re-sell them. Your product should have the edge over the others in the market.

Identifying a stable clientele is also an excellent way to start your business. Examine the needs of a particular group and the products that they use regularly and determine if there's something you can offer these perspective customers.

Marketing services is another business option. You can offer writing, tutorial, English language teaching, massage, music, audio, technology, and other services that people need. Begin by asking yourself these questions:

If your answer to the last question is yes, write down the steps that you need to take to earn from your passion.

HADLEY Learn more about how to start, operate, and expand your own business with the Forsythe Center for Employment and Entrepreneurship. hadley.edu/fce.asp

HADLEY After completing a course, you have the opportunity to join the Hadley New Venture competition. This forum is for aspiring entrepreneurs to present their business plans and compete for cash prizes to help jump-start promising ventures. hadley.edu/nvc

INDEPENDENT VISUALLY IMPAIRED ENTREPRENEURS For continuing support, the IVIE will mentor aspiring business owners. ivie-acb.org

When you've launched your business, I recommend that you give yourself some time to learn your trade and to enjoy it. The next step, growing your business, may be the most exciting but challenging. Promoting your product will increase profits; the resources mentioned above provides information on how to market. I strongly recommend social media marketing, the fastest and easiest way to get the word out there. Tell-it-to-the-world marketing will assist in promoting your product, provide networking services, and even help you learn how to use social media for marketing. Check out this site:

Campbells World PATTY FLETCHER campbellsworld.wordpress.com

ASSISTIVE AND ADAPTIVE TECHNOLOGY

According the ATiA website ( atia.org), HADLEY Learn more about how to start, operate, and expand your own business with the Forsythe Center for Employment and Entrepreneurship. hadley.edu/fce.asp "Assistive technology (AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities."

Not only is assistive technology a tool that can help visually impaired individuals be on the same level playing field as their sighted peers, it also provides leverage in personal and household management. We can pay bills, conduct bank transactions, do online shopping, order groceries, and so much more. Following are recommendations for assistive technology.

SCREEN READERS According to the AFB website, "Screen readers are software programs that allow blind or visually impaired users to read the text that is displayed on the computer screen with a speech synthesizer or braille display. A screen reader is the interface between the computer's operating system, its applications, and the user."

JAWS® OR (JOB ACCESS WITH SPEECH) According to the Freedom Scientific website, "JAWS, Job Access with Speech, is the world's most popular screen reader, developed for computer users whose vision loss prevents them from seeing screen content or navigating with a mouse. JAWS provides speech and Braille output for the most popular computer applications on your PC. Navigate the Internet, write a document, read an email and create presentations from your office, remote desktop, or from home."

ZOOMTEXT MAGNIFIER/READER According to their website is "a fully integrated magnification and reading program tailored for low-vision users. Magnifier/Reader enlarges and enhances everything on your computer screen, echoes your typing and essential program activity, and automatically reads documents, web pages, email." freedomscientific.com

NVDA OR (NON-VISUAL DESKTOP ACCESS) A free, open-source and globally accessible screen reader for Microsoft operating systems available at nvaccess.org/download

ADAPTIVE EQUIPMENT

ADAPTIVE EQUIPMENT Adaptive equipment is designed to help people perform daily tasks. It includes mobility assistance, (e.g., canes), sensory assistance, (e.g., visual aids and electronic readers), and self-care assistance (e.g., adaptive appliances). Before purchasing any technology, make sure to identify what you need for the most cost-effective price. The following resources will help you decide the equipment best suited for your needs and your wallet.

FUTURE IN SIGHT An organization that incorporates assessments and adequate training to clients so they can optimize the use of technology within daily activities. futureinsight.org/services/technology-braille

ACCESSIBLE WORLD Offers a guide for buying assistive technology. Click on resources "assistive technology buying guide" retailmenot.com/blog/assistive-technology-buy- ing-guide.html

MAXI AIDS An online catalog of independent living products. maxiaids.com

ACCESSIBILITY MINUTE Provides a weekly technology podcast. Archives of podcasts provide some discussions about gadgets you may need. eastersealstech.com/category/accessibility-minute

ACCESS WORLD AFB's monthly online technology magazine with reviews of technology products and online resources for people with vision loss. It includes a searchable listing of assistive technology and independent living products. afb.org/blindness-and-low-vision/using-technology

HELPFUL APPS

Download the following apps on an Apple or Android smartphone for enjoyment and independent living:

BE MY EYES A free app that connects blind and low-vision people with sighted volunteers and company representatives for visual assistance through a live video call. bemyeyes.com

SEEING AI A talking camera app that describes and identifies people, objects, color, currency, lights, images, pictures, scenes, and products. It can also speak text and read handwritten documents when in front of the camera. microsoft.com/en-us/ai/seeing-ai

KNFB READER MAXI AIDS An online catalog of independent living products. maxiaids.com Gives you access to print and files anytime, anywhere, by converting text to speech. knfbreader.com

BARD MOBILE Delivers free talking books and Braille to your smartphones and connected devices. This utility is from the National Library Service for the Blind and Print Disabled. loc.gov/nls/enrollment-equipment/register-for- bard-get-bard-mobile

ORIENTATION AND MOBILITY (O & M)

Orientation is knowing where you are, your bearing from a physical reference in your home, or outside. Mobility is the ability to move from one point to another, including transportation. Orientation and mobility, or O&M, is part of rehabilitation training mentioned earlier, since most traditional jobs require workers to report to a brick and mortar location. O&M training includes getting to and from the workplace.

Considering the advice of O&M experts, the choice of whether one should use a cane or a guide dog is determined by what works best for the individual. But, if one were to choose a dog guide, I recommend applying to The Seeing Eye School, Inc.

THE SEEING EYE SCHOOL The oldest and one of the largest guide dog schools in the world, Seeing Eye shows the highest success rate for matching dogs with handlers, conducts maximum training in traffic and gives 100% ownership of the dog. seeingeye.org

With O&M skills, a guide dog, or adaptive equipment, a visually impaired person can get around independently. Travel has never been more comfortable using apps on smartphones. For example, with Uber and Lyft, one only needs to click a button to get a ride. However, if public transportation is not very accessible, or if the transportation cost is unreasonable, one can apply for paratransit services through the local rehabilitation service organizations. lowvision.pre- ventblindness.org/resources

AFB DIRECTORY OF SERVICES LISTINGS 

To find services specific to the needs of people who are blind or visually impaired, visit visionaware.org/directory.aspx . This is the web address for the AFB Directory of Services Listings. Choose the category of service you'll need, your state, and the name of the organization from the drop-down menu to populate the listings. To my friends with visual impairment: This guide can only be as good as what we make of it. Together, as a community, we can grow a heart of courage to fight for gainful employment.•

ABOUT THE AUTHOR:

CHRISTINA LLANES MABALOT

Christina Llanes Mabalot is physically blind from aniridia, but has a vision. She enjoys touching people's lives to bring out the best in them. She contributes a monthly column,"Heartsight," to this magazine. Christina earned her B.A. degree and Masters in Education from the University of the Philippines, Diliman, specializing in Early Intervention for the Blind. Christina is blissfully married to Silver Mabalot, also physically impaired, her partner in advancing noble causes. Their children are Paulo and Jem, who has aniridia. Visit leadershiptovision.com

TAKING CONTROL OF YOUR CHILD'S IEP EXPERIENCE

I read up on IEPs and I studied my daughter's 28-page document. I learned an IEP was written to provide access and accommodations while protecting her educational rights as she moved through the education system. I learned it is a federal document which crosses state lines in our country. I learned the law and my rights as a parent.

BY E. GAY GROSSMAN

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S is for September, school, and stress… and replacing stress with serenity. OK, serenity is too strong a word. I am sure I never would have used the word serenity and school in the same sentence when I was guiding my daughter through her years of schooling. I'll admit, this past September was the most pleasant September in 19 years. Why? Because my daughter graduated from college in May and there was no need to consider educational access and accommodations as I flipped the calendar past summer.

What a relief, I'll admit, but for those of you in the throes of education for your special needs child, it's tough to see a light at the end of the tunnel. Looking back, there are things I did right and things I did wrong. I'll share my experiences with you in hopes of making your educational experience more productive and successful for you, your child, and the school.

In this article, I'll tell you how to advocate for your child. I am an advocate of taking control of your child's IEP (Individualized Educational Program). Be involved in the preparation, the writing, the IEP meeting, and the follow through of the IEP goals. If you do your homework upfront, it will pay off in multiples down the road. I spent the first few years figuring out the system. I learned things like: there would be 10 or more people from the school at an IEP meeting, the needs of my child would be read first, reports and assessments would be read from therapists who worked with her, goals would be shared, and finally, my concerns would be read. Last is where my concerns as a parent fell on the agenda.

In the beginning, these meetings took up to three hours. As the time would tick by, people got up and left for prior commitments and at the end, I would be sitting at a large conference table with two or three others from the school. In the end, I'd leave without my concerns being fully addressed. I'd be tired, frustrated, and yes… angry.

I decided I needed to change the WHO from the school… to me.

A side note here is that some readers will disagree with me on this point. Many parents feel the job of education falls to the schools and the schools need to figure it out. There are times I agree with this, but as a whole, imagine how difficult it is for a teacher, with a full classroom, to figure out how to best accommodate each of her students – and then follow through on each and every accommodation necessary for the success each student. For the success of your own child, make it a team effort and engage; be a part of the process. I read up on IEPs and I studied my daughter's 28-page document. I learned an IEP was written to provide access and accommodations while protecting her educational rights as she moved through the education system. I learned it is a federal document which crosses state lines in our country. I learned the law and my rights as a parent. I learned about IDEA and what her rights were as a student who had special needs.

You can learn about IDEA here: ideapublicschools.org What I read in my daughter's early IEP made me think the goals being proposed could be better thought out and more suited for her needs. I wanted an IEP written specifically for her. An IEP is an Individualized Education Plan. It is written and designed for each student individually. I sat down with a pen and made obvious updates like phone and address, as well as things less obvious like the goals set out for her. I took the lead and wrote her IEP.

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PEN TO PAPER: What I read in my daughter's early IEP made me think the goals being proposed could be better thought out and more suited for her needs. I took the lead and wrote her IEP.

I didn't know what an IEP was when I started, I had to read and learn about it. You can start learning by looking up information on where your child should be today. What grade are they in and what skills has the typical child mastered by this age or grade? This is the first step to writing the IEP. Choose a couple areas where your child needs support.

For example: You may notice yourself that your child needs help with coordination and communication. Now go to a website for your child's age or grade to get a resource saying they should be able to master a particular skill by a certain age. Print it out so you can have it as a resource. Be sure to note the website link since it often doesn't print out on the page. Here is an example of a site sharing ages and tasks to master by age: scholas- tic.com/parents/school-success/school- life/grade-by-grade/preparing-kindergarten.html.

This link takes you to a list which prepares for kindergarten. Review the list and see what your child is missing in mastered skills for their age. Choose one for physical therapy, occupational therapy, and speech therapy. Some examples of goals to consider are below:

These are clear and defined goals with measurable objectives or outcomes. If each therapist wants three goals to work on, create them just like the above. You can ask the therapists for their ideas too. Work as a team.

Learn the IEP meeting structure: I learned I could request who would attend the IEP meeting from school and I could find out prior to the meeting who would be attending. I could take anyone I wanted to the meeting, as long as I gave the school advance notice. I learned to request the teacher's and therapists' reports one week prior to the IEP. This gave me the time to read them and formulate questions prior to the IEP meeting. I learned I could take the lead on the agenda to keep the meeting moving along. These things took years to learn and I wish I had taken the lead of getting reports and leading the agenda earlier.

To be honest, getting the reports one week ahead of time was not something the school wanted to provide, but I requested it in writing and insisted on it, knowing my rights.

The first time I requested the reports ahead of time, it didn't happen. One week prior to the meeting, I didn't have two reports so I cancelled the meeting. The school was not happy because they had worked hard to coordinate the meeting with all the different teachers, therapists, and staff. I understood this and referred back to my email of request and suggested they explain the inconvenience to those who had not submitted the reports on time.

The meeting was rescheduled after I had all the reports. This is not being difficult; this is advocating for your child. You are going into the meeting blind if you don't have time to prepare. Having those reports lets you know what needs and supports your child has at this time from the perspective of the teacher and the therapists. This information is necessary to move forward with recommendations for the upcoming year.

I also flipped the meeting around and made my own agenda. I put my concerns at the top so everyone in the room could start off thinking about what I felt needed to happen to help my daughter be successful. After, we moved to the reports, sharing only the highlights, and how we were going to set up accommodations for her needs. I ran the meeting and I kept it to one hour. I would argue any IEP meeting over an hour is not productive.

There is a lot to listen to in these meetings and they are filled with emotion. I always felt like this was the time I would be reminded of what my daughter couldn't do, rather than what she could. It reminded me of how difficult things were for her, and I usually had to fight an individual at the school, the school as a whole, or the district to get what she needed. It was exhausting. I'm telling you this so you won't feel you are the only one with challenges. It's not easy, but there are things you can do to make it more manageable. I learned, but not until high school, to lead these meetings in a positive manner, speaking of what she COULD do and what she WANTED to master and how we could set up accommodations to help her succeed.

The school IEP is something to manage as you do your child's healthcare. You learn as you go. Don't be afraid to reach out to other parents who have a child with special needs. They may have tips too. Stick with the parents who are positive and making progress by being a part of the IEP team.

Where do you go for help when things don't work, or people don't agree? First, know your rights. Here the law is explained: wrightslaw.com

If you need to hire an advocate or attorney, it's ok. Sometimes it takes a third party to explain the two sides. This is an investment in your child's future so having the support you need is important. Be aware of the social services provided in your city and state. Some states will provide an educational advocate for no charge. You can find out if this service is available to you through your child's case manager or social worker. The social worker can be found through your child's pediatrician or specialist.

Have your child tested by a professional outside of the school system. It's helpful to have the opinion and suggestions from someone who is independent of the schools. Your child's pediatrician can refer you to a neuropsychologist who can access how your child best learns and accommodations which may help in school. You can always take a friend with you to the IEP meeting for moral support or to take notes for you. This will allow you to focus on the meeting. Be sure to give the school notice, by email, who you will be bringing.

I found the best time to have yearly IEP meetings was February. It made it easy for me to research what my daughter should be doing because it was the month of her birthday. It also meant the meetings were held at a time of year when most other IEP meetings are not. The majority of IEP meetings are scheduled for the end of the school year, in preparation for the next. This comes at a time when teachers are more stretched for time and spring is in the air, leaving more focus on the weather than what is happening in the classroom.

When do you sign the IEP? I n-e-v-e-r signed an IEP at the IEP meeting. I wanted to take it home, read it over, and sign it in my own time. Remember this is a federal document and it should be read over carefully, before you agree and sign it. There is no law saying you need to sign the IEP at the meeting. You want to be able to go home and compare the number of therapy visits they are agreeing to with last year's IEP. This is a federal contract and you want to be sure it is just the way you want it. Every single year, I would be asked to sign it on the day and be told why it was more efficient to do so. I still never did. Even when we agreed to everything we had discussed, I didn't sign it that day.

Your child is the why. Sometimes you will be able to make changes in the system so other children will benefit as well, but remember you are at the IEP meeting for only your child.

I found it helpful to know the details of the IEP document. Read it carefully. I met with teachers to be sure they agreed with the goals and made sure they had the support needed to help my child obtain these goals. I wanted the teacher to know I supported them, as I expected the teacher to support my child.

Keep in mind this is for your child and their future. Use the IEP to build their confidence and talk with them about their goals. What would they like to have support doing? 

Good luck and keep reading to learn how you can best support your child. Every child can do anything with the proper support to accommodate for their needs.•

FURTHERMORE : OTHER THINGS I THAT I HAVE LEARNED

IEP meetings: These can be called at any time of the year, multiple times a year. Make your request by email so there is documentation of the request. The school is required by law to set up a meeting. Here is a link explaining timelines. adayinourshoes.com/iep-timeline-how-long-does-the-school-have-to

Emergency Evacuation Plan: Be sure there is an Emergency Evacuation Plan in place for your child. What happens during drills? How does your child get out of the building if there is an emergency? Get a copy of the plan from the principal's office and go over it with your child's teachers so they all know the plan to exit safely. There are laws to give our children access into a building, but there is no law to see they get out safely. Here is a place to learn about it. wrightslaw.com/info/emer.evac.plans.scott.htm

Off-site field trips or On-site activities: Every student has the right to attend school field trips and participate fully in activities on campus. This can be challenging for a lot of kids, but if you do the legwork ahead of time, it will be more enjoyable for your child and you too. Find out the details of the trip as soon as you can. How are students traveling? How long is the ride? Where are they eating? Is the location accessible? What about the bathrooms? What are the activities? There were many times I called the location to speak with someone about the upcoming day so I could be sure to troubleshoot any issues which may arise.

Moving forward: Remember the IEP is for your child. The goals can be anything you want to have happen for your child. If you want it to be attending a field trip, incorporate it into the goals. If you want to be sure there is support for an oral presentation in front of your child's peers, make it a goal to work on it with the speech therapist.

There are many options after high school which aren't college, but if college fits your child's goals, help your child achieve this dream. The IEP doesn't carry over to college, but it's a helpful tool to use when asking for accommodations. Your child will need to submit their request for services to the Disability Office before each semester starts. The IEP can be used as a guide and the requests can come from the list of accommodations used in previous years. There are multiple books available on this subject. Each semester of college, my daughter submitted her same requests of accommodations from high school to the Disability Office on campus, as well as each professor.

Document, document, document: I made sure to correspond with the school and the district by email, so the correspondence was timestamped and documented. This alone is the single most important piece of advice I can share.

ABOUT THE AUTHOR:

Gay Grossman has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy. She co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia with her husband, Steve. ADCY5.org supports families affected by the disease as well as their clinicians and world-renowned researchers who study the gene and its variant. Together, they continue to build a community of hundreds with this disease, when they started with only their daughter, Lilly. Gay and Lilly coauthored a children's Rare Disease book, We Are All Rare, providing a Rare Disease learning tool for elementary school-aged children. Gay successfully advocates in a variety of environments including, but not limited to, educational classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease community to gain access to clinical trials and medical therapies. Connect with Gay on LinkedIn.com linkedin.com/in/gaygrossman