Spotlight on Parent to Parent of New York State

Today’s Disabilities Leadership Council spotlight is on the organization, Parent to Parent of New York State and its Executive Director, Janice Fitzgerald. This organization creates a support system for parents of children with disabilities by connecting them with other parents who have shared similar experiences. “We cannot underestimate the importance of providing emotional support when a parent begins their journey,” Janice said during our interview. Parents often “feel stressed after their child’s diagnosis,” so the organization aims to show these parents that they are not alone. Parent to Parent is primarily a “navigator,” teaching parents how to “navigate their way through the system” by connecting them to other support groups at no cost.

One of Parent to Parent’s defining characteristics is its system of “support parents.” Generally, the support parents have used Parent to Parent in the past and want to help others in similar situations. According to Janice, there is a training system to become a support parent; one must contact the coordinator of the training center and the coordinator will, in turn, send information for a self-preparation course. To gauge the organization’s success, a letter is sent to ten percent of the families to see if their needs were met.

Although Parent to Parent is “less well-known” than other organizations for people with disabilities in the area, it is unique because its members hail from all areas of New York. Other organizations are mainly centered in New York City, but Parent to Parent reaches all parts of the state, from the Finger Lakes to Long Island. “We have people accessing our organization from rural areas to metropolitan ones,” Janice said. The organization also has few language barriers; all printed material is available in other languages and many of the parents involves in the support program can communicate in more than one language. As Stuart Flaum, Chairman of the Disabilities Leadership Council said, “It is wonderful that Parent to Parent works with all families regardless of language, culture, or disability. There is strength in numbers, and the sharing of information and strategies benefit everyone.” In total, the Parent to Parent contains about 1,200 support parents who offer advice and somewhere between 9,000 and 10,000 who seek assistance. As Janice said, the organization sustains itself because, “There are new babies born every year, so there will always be new parents calling us for help.”

Janice is already looking toward Parent to Parent’s future. She says that in five years Parent to Parent will, “still be there for parents, to help them make it through the emotional impact of having a child with disabilities.” Also, because social networking websites have become so prominent in America, she predicts that the organization will have “more of a virtual presence.” Stuart “applauds Janice for recognizing the importance of social networking—just look at http://especialmatch.com/ for an example of how social networking is making its way into our society.” Janice hopes that New York, as a whole, will “become more supportive” of families with children with disabilities and that there will be “less institutional placement” of children. Janice is also excited about the recent collaboration of Special Needs Family Planning, Parent to Parent, the Kiwanis, and Fordham University, because “more families will be helped.” She believes that their collaboration will “help [Parent to Parent] reach families that we are not already in contact with.” Stuart added, “Fordham University opened new doors for Parent to Parent, the Kiwanis, and Special Needs Family Planning at AXA. Now, families can gather together to see their strengths as opposed to their weaknesses.” For more information about Parent to Parent, please visit their website, http://www.parenttoparentnys.org/.

Spotlight On Heidi Reichel

Today’s Disabilities Leadership Council spotlight is on Heidi Reichel, a registered special education teacher and educational consultant. She currently works with special needs students and instills in them the skills necessary to lead “self-sufficient, independent lives.” In a recent interview, Heidi discussed the problems that result from giving special education children extra, often unnecessary accommodations in schools. “Too little is expected of [special education children],” Heidi said, “They are given accommodations for things that can be taught, like learning how to work within a time frame.” She believes that schools often take the simplest route; they “reach for accommodations before they understand what limits the child.” Schools often restrict a student by not teaching or urging a child to learn. As Heidi said, “If there is something that says a child needs instructions explained, I want [the child] to have the goal to understand directions on their own. I don’t want to limit the children by not teaching them.”

However, Heidi does not oppose all accommodations offered. She simply feels that teachers should be certain that the child truly needs the accommodations before they are offered. Heidi explained that, “Theoretically, a school is supposed to find where the special education child stands with their abilities. Then, the school is supposed to make goals and determine what needs to be allowed for the student.” Despite the rules, schools often act prematurely and give children accommodations in class before their abilities are tested and compared with their peers’ skills. Parents also fight for accommodations for their children; they do not want their children to “get hurt or fail” in the mainstream classes.

According to Heidi, once special education children leave high school and prepare to enter the workforce, they realize the “crippling effects” of having too many accommodations. Often, the children cannot read or write well enough to construct a substantial résumé, or they find themselves unable to finish work on a specific deadline; they become “entitled” and cannot succeed in a world of deadlines and schedules. Heidi says that the best evidence to support her claims are the students she works with. “I have taken students who were in special education and helped them enter the mainstream classes, go to college, and lead a successful life,” she says. “In the same way that I can teach, these kids can learn.”

After years of lobbying for legislation to accommodate children with disabilities, the topic Heidi raises can potentially strike a nerve with parents. However as Heidi says, she “frequently get[s] support from parents she has worked with.” Heidi feels that the special education system is “far from flawless,” and though she does receive opposition from certain school districts, she believes that her points must be addressed. As Stuart Flaum, founder of the Disabilities Leadership Council says, “Heidi shares an interesting perspective on the subject of special education and the goal of the Council is to shed light on differing viewpoints. We don’t want to hide others’ opinions; we welcome and appreciate them.” To learn more about Heidi Reichel, please look at the blog entry below which further describes her opinions.

Accommodating Special Needs Children

The Disabilities Leadership Council recently received a fascinating article written by one of our members, Educational Consultant, Heidi Reichel. The article highlights some of the problems that result from giving special education students accommodations in schools. It also addresses some of the difficulties that special education students face once they leave high school and prepare to enter the workforce. The article is found below.

Toward the close of the last school year there were news articles about special education students who were ‘graduating’ school with IEP ‘Diplomas’ and not prepared for competitive employment. This should not have come as a surprise to anyone. Those students were on alternative assessment. They did not have to sit for any of the State tests that typical students take. They did not do the same coursework. There is no disputing the fact that, those students were not being prepared to lead self-sufficient independent lives. IEP ‘Diplomas’ were not designed for students who had the potential for competitive employment. IEP ‘Diplomas’ are not high school diplomas at all, in fact, students who have received IEP ‘Diplomas’ are still eligible to continue going to high school to pursue a regular high school diploma.

The more insidious problem, however, is that many special education students (often, but not always, classified as learning disabled) are graduating school with actual high school diplomas and are not prepared either. These students passed their classes and exit exams but they did it with the help of special education accommodations such as one to one aides, tests read, scribes, directions repeated and or simplified, and extended time. Perhaps their spelling errors were not to be counted against them or perhaps they weren’t required to fill in the bubbles on Scantron answer sheets. Graduating from high school led these students to believe that they were ready for employment or higher education. Imagine their surprise (maybe I should say shock or horror) when they found that they weren’t able to read or write well enough to fill out a job application or when they could only qualify to enroll in non credit bearing remedial courses at the local community college.

I know that a lot of teachers and parents believe that giving students special education (and 504) accommodations only levels the playing field. However, that would only be true if school was a game and the goal was just to pass the tests and eventually get a diploma. School is not a game. The purpose of school is to educate students so that they have the tools necessary to become successful independent adults. Keeping students on an artificially leveled playing field denies them that opportunity.

“But these kids would never make it without accommodations. You’re setting them up to fail!” I would never set children up to fail and I don’t want others to prevent them from succeeding. What I am advocating here, is going beyond accommodating them all the way to educating them. Teach them how to read, write, fill in Scantron forms, follow instructions and pay attention all by themselves. They will not have someone at their beckon call to help them with these things once they leave high school. Even if their aspirations are low and all they want to do is drive a car, get a job, and go out on dates, they will need to have these basic skills. I have found that in over 90% of cases if students aren’t learning, then they are not being taught (appropriately for them). By the way, it doesn’t matter if a student is being taught with a ‘scientifically proven’ method. If that student isn’t learning then that method is inappropriate for that student.

Heidi Reichel is an Educational Consultant with a private practice in Huntington, N.Y. She is primarily involved in tutoring, remediation, diagnostic educational testing, and advocacy. You can contact her at (631) 423-6215 or by e-mail at Heidi1121@att.net.

Copyright 2009 by Heidi Reichel

My Time, Inc. and Lucina Clarke

Today’s Disabilities Leadership Council spotlight is on the organization My Time, Inc. As stated on its website, My Time, Inc.’s mission is to “empower, educate, enlighten, and uplift parents of children with autism and developmental disabilities.” The Disabilities Leadership Council was fortunate to interview Lucina Clarke, the founder of My Time, Inc. During our meeting, Lucina described her inspiration and aspirations for her organization.

After spending more than ten years as a special education teacher, Lucina witnessed firsthand “the frustration of parents not getting support in raising their children with autism,” and decided to take a stand. She left teaching to “serve the needs of the whole family” and “opened [her] home” to families in need of support and understanding. Lucina applied her knowledge of children with disabilities to teach parents in Brooklyn, New York how to care for their kids while making time for themselves. When she taught, Lucina used to ask herself, “What is being done for the parents [of children with disabilities]?” By creating My Time, Inc., Lucina is now making an impact on families of children with disabilities. She made it her duty to assist parents in any way possible—by teaching them how to balance their personal lives with their parental roles, creating a network of parents, and by “adding a personal touch by giving each family valuable resources to use at home.” Besides assisting parents, My Time, Inc. works in conjunction with churches, schools, and the government to raise awareness about autism and other developmental disabilities. The organization holds numerous fundraisers throughout the year, one of the largest being a community walk at the end of May. Lucina finds community support essential to the success of My Time, Inc., saying, “A collaborative effort can be a successful effort.”

Over the course of the last two years, My Time, Inc. has expanded online to extend a support system to parents outside of the organization’s home in Brooklyn. Now, a network of communication between parents of children with disabilities is being constructed online. The organization’s growth is due in part to funds from government grants and private charities, as it is non-profit and free for any parent, grandparent, or caregiver of children with disabilities.

Currently, Lucina is using the funds raised to construct a community center for the families of children with disabilities. “It will be a community to teach [in] and learn [from],” Lucina said. The center will provide “recreational activities for families, workshops for parents, and day care,” the latter being a source of excitement for Lucina. As she mentioned during the interview, it is very difficult for families of disabled children to find reasonably priced, educated day care providers. For families attending My Time, Inc.’s educational workshops, Lucina plans to provide day care with trained personnel.

Although Lucina is busy working on many projects and fundraisers for My Time, Inc., this has not prevented her from examining the current mental healthcare system in America. During the interview, Lucina addressed the widespread discontent with the state of mental healthcare. In her words, the best way to increase coverage and improve the healthcare system is to “have your voices heard. You must be the advocates for your children.” According to Lucina, the best way to influence the government is to “take a risk” by forming a group to “e-mail Congress or petition.” She encourages change in the disabled community by remaining vocal in local, state, and national government.

For parents of children with disabilities, there “is a fight everyday.” My Time, Inc., under the guidance of Lucina Clarke helps to ease the struggle. As Stuart Flaum, founder of the Disabilities Leadership Council and longtime friend of Lucina said, “She’s an extraordinary person. Lucina is always on the move—speaking with leaders and politicians in Albany and in New York City, while working with schools, families, and volunteers to make the world a better place.” Lucina foresees greater expansion of her organization in the future and hopes that her community center will serve as a “model to create more parent community centers” across the country. For more information regarding My Time, Inc. or Lucina Clarke, please visit the organization’s website, http://www.mytimeinc.org/.

NYC Reaches Medicaid Deal

The Disabilities Leadership Council recently received an interesting news story from one of our members, attorney Wendy Sheinberg. The article details how New York state and city agreed to pay out $450 million to settle allegations that they submitted false claims for disabled patients to the federal government's Medicaid program. The article can be found at http://www.reuters.com/article/domesticNews/idUSTRE56K5YI20090721

The College Internship Program at the Berkshire Center

Today’s Disabilities Leadership Council spotlight is on the College Internship Program (CIP) at the Berkshire Center in Lee, Massachusetts. According to its website, the Berkshire Center provides “individualized, post-secondary academic, internship and independent living experiences for young adults with Asperger's Syndrome and other Learning Differences.” The program prepares students to live independently in a number of ways. It provides support and guidance for students enrolled in regular college courses, job training and internships, and helps students learn how to manage their own residential arrangements. The Berkshire Center also teaches important social and personal financial skills. The College Internship Program is also offered at three other centers around the country: the Brevard Center in Melbourne, Florida, the Bloomington Center in Bloomington, Indiana, and the Berkeley Center in Berkeley, California.

The Disabilities Leadership Council also had the opportunity to interview Karen Noel, the Center’s Admissions Director. She said that the College Internship Program generally has enough space for all of its applicants. When asked about the program’s financial aid policies, Karen said that financial aid is provided in three ways: “In California, the Berkeley Center is vendorized by the state Regional Center which provides financial aid to regional center clients coving most of the tuition, minus room and board, classes and therapy. The Student Educational Development Fund (SEDF) is a non-profit foundation developed as a means to provide financial aid to students who will benefit from the CIP program and cannot otherwise afford it. [And the] Sallie Mae TuitionPay payment program spreads payments out over 12 months instead of lump sums.” In these tough economic times, it is important that finances don’t prevent students from getting the services and care that they need.

Karen also talked in more detail about some of the services provided by the CIP. She said, “CIP’s goal is to develop a students overall well-being. Career coordination includes individual and group meetings with the intent on placing students in community service, internships and jobs. Socially, students meet one on one with mentors (usually psychology graduate students) to practice various skills in a comfortable environment as well as partake in social thinking classes.” However, according to Karen, CIP does not award diplomas or degrees; it supports students in their pursuits at nearby colleges. She said, “Students leave CIP with improved social and life skills and a better understanding of the strengths and challenges of their learning differences.”

Lastly, Karen explained where students go once they have finished the program. She said, “CIP graduates may transfer to a university, obtain a job, move into an apartment, etc. At the core of the program, CIP works individually with students to provide a foundation on which they can live independently.” The Council believes that the CIP is very important in providing support during the difficult transition from school into adulthood and the workforce, and that it practices the innovative solutions that are critically needed in the special needs community.

To read the full interview with Karen Noel, Admissions Director for the Berkshire Center, please visit http://docs.google.com/View?id=d56tc3v_5g7knj7gw

Blessed with Autism and Christina N. Peck

Today’s Disabilities Leadership Council spotlight is on the organization Blessed with Autism (http://www.blessedwithautism.com/) and its founder, Christina N. Peck. The organization helps parents of children on the autism spectrum recoup the considerable costs of therapy from their health insurance providers. In a recent interview, Christina explained why it is so difficult for parents to get these services paid for by insurance. Most of the providers of these services, which include speech therapy, physical therapy, occupational therapy, and behavioral intervention, are not in any of the health networks set up by major health insurance providers. Since they are out-of-network, parents have to pay for the services up front and out of their own pocket, and can only recover costs if their plans include out-of-network benefits. These costs are especially difficult to recoup if parents don’t have a PPO insurance plan. Christina said, “It is easier to recoup costs from private insurers than from Medicaid; you can go out of network.” Parents with an HMO can also find it tough to get reimbursement; Christina said that these parents “should get new [private] insurance. In the long run, the therapy can cost $90,000 and with this insurance you can get back maybe $50,000 of that.” Christina said that employer-provided PPO plans allow one to recoup many of the costs of therapy. This entire system is made even more difficult by the fact that there are many differences in plans not only from company to company, but even within different plans of the same company!

Christina explained how parents can claim reimbursement for their child’s therapy. She said, “The key is diagnosis codes for the type of therapy. You have to code for the medical condition being treated, not for autism. Quite often, providers don’t even put the billing codes on the bill. Parents must submit the bills and proper forms to their insurance company using codes provided by Blessed with Autism. If you submit a bill that is coded for autism, there is no chance of receiving reimbursement.” Coding for the medical condition means that the bill will be coded for the specific problem being treated, not autism. For example, for speech therapy, the bill would be coded as treatment for a speech impediment, not as treating for autism.

Christina’s book, Blessed with Autism, contains all the details on how to deal with different kinds of insurance and what the different codes and procedures are to deal with every type of therapy and treatment. The book is available on her website, http://www.blessedwithautism.com/. Christina’s hope is that, using the book, parents can complete the entire process on their own. For those parents who need help, Christina’s colleague Yvonne McNamee runs a consultation service through the Blessed with Autism website. Christine said that her main goal is to “empower people to do it themselves.”