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.”

Special Needs Organizations: The Brooklyn Center for the Independence of the Disabled

The Disabilities Leadership Council is continuing its series highlighting important organizations in the special needs community. Today’s focus is the Brooklyn Center for the Independence of the Disabled (BCID). According to its website, the BCID “[empowers] persons with disabilities by improving the quality of their lives and fostering their integration into the mainstream of society.” The Center also seeks to ensure that persons with disabilities have their full civil rights. It is highly active in advocacy for individuals with disabilities and in training these individuals to be their own advocates. Services provided by BCID include disability rights advocacy, peer support, resource information and referral, housing advocacy, independent living skills consultation, government benefits information and advocacy, and youth services.

One of the major issues that BCID is trying to work with is transition planning, for young adults transitioning from the school system into the workforce. The Disabilities Leadership Council was able to interview Raphael Rivas, the BCID’s Youth in Transition Coordinator, to try and learn more about the issues facing these young adults. He said that a big problem is that many young adults aren’t aware that they have a disability, whether it be a learning or developmental disability. Raphael said, “They’re not aware of it while they’re in school. Because they don't realize they have a disability, they may not be fully prepared for an interview. They more often than not don't know if they should disclose their disability if they even know that they have one.”

Raphael also explained that the current educational system is inadequate for persons with disabilities. He said that many individuals are getting a diploma called the IEP diploma, which (unlike the GED) is not a substitute for a regular high school diploma. Because of the IEP’s shortcomings, many employers are unwilling to hire students who only have the IEP diploma. Raphael said, “These students are leaving the system lost. They are falling through the cracks and not getting the services that they need.” He said that New York is phasing out the Local High School Diploma. Raphael said, “There is more potential for failure at this point, since students have to get either the GED or the regions diploma to be attractive to employers.” When asked about the current state of transition planning, Raphael said that the system currently in place in New York City is inadequate to serve the needs of the students. He said, “Transition plans in New York City are poor and generic, not tailored specifically to each individual.”

Lastly, Raphael talked about how the system of caring for persons with disabilities will change in the future. He said that, as awareness of these issues increases, more people will become involved in helping to solve the problems. More individuals with disabilities will also become involved in advocating for themselves, which will accelerate the drive towards solutions. Disabilities Leadership Council founder Stuart Flaum said, “I think Raphael really speaks for young people in transition. He really understands the needs of youth in transition, in part because he sees them struggling for success as measured by the higher standards that an employer expects.” The Council invites our readers to comment on the blog, because this issue is going to become extremely significant in the special needs community.

Spotlight On: National Autism Association-New York Metro Chapter

The Disabilities Leadership Council is focusing today on the New York Metro Chapter of the National Autism Association (http://www.naanyc.org/). Unlike many other non-profit organizations, the main focus of the chapter is not on fundraising for families, research, and advocacy. Instead, its mission is to “educate and empower those in the Autism community.” In a recent interview, Sabeeha Rehman, the president of NAA-NY Metro, explained that the chapter is distinct in that “we work closely with families and parents that have been affected by autism. We are a parent-centered group that seeks to educate and support parents.” She also talked about how the chapter provides this support in four main ways. The chapter holds two sessions every month, each with a different purpose. One session is an educational session, in which the chapter brings in a nationally recognized expert to talk about an issue related to autism. Recent issues included the Tomatis therapy system, financial planning, and applied behavior analysis (ABA) treatment. The second session is a Parent Network Exchange Meeting, in which parents participate in a discussion moderated by an expert facilitator. At the latest meeting, the facilitator was an expert in Relationship Development Intervention, another type of therapy for children on the autism spectrum. These sessions are also designed to help parents network with each other. According to Mrs. Rehman, NAA-NY Metro is rolling out a third monthly session starting this September, which will be a support group moderated by a social worker. The chapter also runs a parent mentoring program called NAAvigators, where parents who have expertise and experience act as mentors to families who are new to the autism community. The mentors help them navigate through all the complexities surrounding having a child with autism. Mrs. Rehman said, “This program of one-on-one assistance really helps families cope.”

When asked about how effective the chapter has been so far, Mrs. Rehman said, “We have been very effective. Through our initiatives we have been able to educate parents on a broad range of topics, such as different treatment modalities.” After 18 months of existence, the chapter now has about 600 members, both families and individuals. She also talked about how the organization is active in the media: “We are solicited by the media each time there is a breaking story on autism.” Mrs. Rehman also explained how active the chapter is in lobbying for or against legislation in Albany. While the chapter is restrained by finances from launching big campaigns for or against various pieces of legislation, it does inform its members about pending legislation and urges them to email their local representatives echoing the chapter’s position on it. The chapter is also part of a statewide coalition of autism organizations who pool their resources to support bills already on the floor and try get others introduced.

The NAA-NY Metro Chapter has its own website and blog, where you can get more information on the organization and on past and upcoming events. Disabilities Leadership Council founder Stuart Flaum said, “NAA-NY Metro is very forward-thinking. Their seminars and sessions present outside-the-box solutions, which are the type of solutions we’re looking for too.”

Special Needs Professional: Bruce Lish, DDS

Today’s article is on another important professional in the special needs community. Dr. Bruce Lish is the Chairman of Dentistry at St. Luke’s Roosevelt Hospital in New York City and runs his own private dentistry practice in Brooklyn, NY. Dr. Lish provides specialized dental care for individuals with disabilities. Unlike most dentists, Dr. Lish always employs general anesthesia for routine dental work like cleanings and X-rays. This extra step is necessary to allow him to perform these procedures on some individuals with special needs. Indeed, in a recent interview Dr. Lish said that, “If general anesthesia is not necessary, I don’t do the work. I only see patients that cannot be seen by a general dentist and who need an operating room and general anesthesia.” Dr. Lish said that, as a dentist who works in a hospital, he is uniquely positioned to take advantage of the facilities offered by the hospital and provide care for these individuals. These include operating rooms that are needed to perform some of these procedures.

When asked about his mission, Dr. Lish said, “This population needs quality dental care. Of course, everyone deserves great dental care, but most people are capable of getting it on their own. This population has very limited outlets, and I enjoy being able to provide for this population.” Dr. Lish also noted that it can be difficult to deliver proper dental care to young adults who have moved out of the guardianship of their parents. He said, “It’s our responsibility to take care of those who can’t take care of themselves. These individuals need the care and we’re here to provide it.” Lastly, Dr. Lish noted that, while dental care is important, it is a part of a broader picture of general health and well-being. Individuals with special needs and their families must ensure that they are healthy medically and dentally, in order to lead fulfilling lives. The Disabilities Leadership Council strongly supports Dr. Lish’s work in the special needs community, as a provider of essential services to these individuals. Founder Stuart Flaum said, “The work that Dr. Lish is doing for this community is wonderful. Health and well-being are important not just for individuals with special needs, but for everyone.”