In This Issue
Excerpted from a Positive Behavior Supports Information Brief, courtesy of the PEER (Parents Engaged in Education Reform) project at the Federation for Children with Special Needs, Boston, MA, 1999.
When the Individuals with Disabilities Education Act (IDEA) was amended in 1997, two key provisions related to positive behavioral support were enacted. First is a requirement that the Individualized Education Program (IEP) team address student behavior when it impedes their or other students' learning. IEP teams are to consider strategies, including positive behavioral interventions, to address the behavior. Have you ever heard the phrase, "Treat the symptom, and ignore the disease"? Many people handle discipline that way. They try to eliminate disruptive or dangerous behavior without looking into why the behavior occurs.
Positive behavioral support is different--even revolutionary--because it is based on asking, "Why?" Why can't Pat sit in his seat at school? Why does Richard bang his head repeatedly? Why does Anastasia wander off?
Behaviors usually happen for a reason. For example, a student may use a specific behavior to seek attention. Other behaviors can be a form of communication, particularly for people with limited language capabilities, which may express frustration, anxiety, physical pain, and other emotions, or needs.
It's not always simple to stop challenging behaviors. One goal of positive behavioral support is not merely to "eliminate" but to understand the behavior's purpose. Once the purpose of the behavior is understood, the individual can learn to substitute a more positive behavior that achieves the same desired outcome; people learn better ways to make their feelings and needs known.
First
Steps
Before
you can decide if positive behavior support is the right approach for your
child and family, you need to collect some information. Figure out the
purpose of your child's challenging behavior, what other behavior you can
teach your child to attain the same goal, and to talk to the other people
involved.
Ensuring
Fit With Your Values
This
approach focuses on rewarding good behavior, not punishing challenging
behavior. Is this method consistent with your family's values? You must
be able to take the lead and model this approach for others involved, custom
fit the plan to your child, and anticipate and solve any additional problems
that may arise.
Putting
Together A Collaborative Team
You
probably could do this yourself, but it is much more effective to involve
your family, friends, professionals, and community members who are already
familiar with your family's culture, skills, routines, and family values.
Who works best with your child and has a true rapport? These connections
can often be the miracle ingredient in effecting behavioral changes.
Creating
a Vision
This
approach is not an overnight, silver bullet cure; it takes time and effort.
Your vision of the ideal life for the individual with challenging behavior
will sustain and help guide the journey. Typically, this vision begins
with shared expectations and incorporates, to the maximum extent possible,
the individual's preferences for inclusive activities, relationships, and
daily/weekly routines.
Completing
a Functional Assessment
Challenging
behaviors do not happen repeatedly without reason. Finding out "why" the
behavior occurs is the key to positive behavioral support. Technically,
the finding-out process is known as a functional assessment and
is a method of collecting and testing information. After you identify and
clearly define the challenging behavior, check to make sure you are on
target about the probable purpose(s) of the behavior (for instance, to
quit doing a difficult task). Technical experts or someone who has knowledge
of the person can do this.
Strategies
The
next phase of positive behavioral support begins with strategies to encourage
behavioral changes. These include (in no particular order):
The
Annual Conference—
Another Record-Breaking
Success!!!
"Creating A World of Opportunities," the Federation's annual conference drew a record crowd for the third year in a row with 681 participants. Parents, special education teachers, and health care professionals gave the conference rave reviews. Upon being asked about the best part of the conference, one participant noted "the wide variety of topics offered--there was something for everyone. You have done a great job!" This year's theme focused on empowering parents and their professional partners to have the tools they need to ensure high quality education and health care for all children, especially those with special needs, in these difficult economic times.
Special guests included Bob Gittens, Secretary of Health and Human Services for the Commonwealth of Massachusetts; Gerry Morrissey, Commissioner of the Mass. Department of Mental Retardation; and Debbie Klein-Walker, Associate Commissioner of the Mass. Department of Public Health. Also in attendance were Joan Mikula, Associate Commissioner of the Dept. of Mental Health; Bob Wentworth, Director of Residential Services at the Dept. of Social Services; and Richard Taylor from the Office of Program Quality Assurance, Dept. of Education.
Keynote speaker Nora Wells, Family Voices at the Federation, gave a dynamic presentation focusing on the powerful stories of three families and their quests to gain access to appropriate supports and services. One parent commented, "It was uplifting to me and gave me some ideas of how I can help my child and others in my community." Another parent stated: " I liked the way she honored parents by re-telling their stories in a human way." A panel of experts, following the keynote, presented information about key strategies that families need to know. Dr. Richard Antonelli, a pediatrician, and Whit Garberson from the Mass Department of Public Health spoke of our state's new Medical Home Initiative. Attorney Tim Sindelar of the Disability Law Center, reminded us of the important laws that protect children's rights. The "show-stopper," however, was Dalene Basden, a PAL parent support coordinator from Lynn. Dalene spoke of her own rise from desperation over her child not getting the services he needed to becoming a parent leader in her own community. All agreed, "Dalene was wonderful, a pleasure to listen to, she has a great sense of humor-humor helps!"
Participants
selected from 30 workshops including autism, ADHD, legal advocacy, and
a new assistive technologies strand. "All three workshops I attended were
really good," wrote one parent. "They helped me a lot as a mother of a
child with special needs and as a person." In addition to the workshops,
over 45 exhibitors and tons of free resources filled the large ballroom.
Participants remarked that "the time allotted for networking and exhibits
was terrific. Baby-sitting was second to none! Thanks!" The Federation
extends its thanks to all of those who made this year's conference such
a success, especially its co-sponsors: Massachusetts Families Organizing
for Change, Parent Professional Advocacy League, Family TIES, and the Boston
Foundation.
Accommodation
Vs. Modification
by Julie Sinclair, Director of FCSN--Western Region
Accommodations and modifications, or is it modifications and accommodations? What's the difference? Both parents and professionals often ask this question. Defini-tions and examples are presented below.
Accommodation is defined as a support or service that is provided to help a student fully access the general education curriculum or subject matter. An accommodation does not change the content of what is being taught.
Modification is defined as a change to the general education curriculum or other material being taught. The teaching strategies are modified so the material is presented differently and/or the expectations of what the student will master are changed.
Examples of different kinds of accommodations, taken from the Department of Education's Resource Guide, include:
Accommodations
in scheduling
1.
Changing the time of day for a subject or activity
2.
Adjusting the length of time allowed for a task
3.
Checking the student's understanding of the subject matter
Accommodations
in settings
1.
Working in a small group
2.
Providing an individual work area
3.
Reducing extraneous noise
4.
Allowing movement to increase physical comfort
Accommodations
of equipment
1.
Provide carbon copies of class notes
2.
Allow use of a tape recorder
3.
Allow use of a calculator
4.
Allow use of a computer
Accommodations
in responding
1.
Allow student to tape record responses for homework, tests, etc.
2.
Give the student credit for oral participation in class
3.
Avoid pressure of speed and accuracy
4.
Provide a scribe for written responses
Accommodations
in materials
1.
Simplify complex directions
2.
Provide the same content with a lower reading level
3.
Reduced homework assignments
4.
Write due date in corner of assignments
Accommodations
in instruction
1.
Provide study skills training
2.
Use study guides
3.
Provide concrete examples
4.
Pre-teach vocabulary
Accommodations
for test taking
1.
Open book exams
2.
Oral exams
3.
Allow extra time for exam
4.
Read test item to student
Accommodations
for help with organization
1.
Assign a homework buddy
2.
Provide daily or weekly progress reports to parents
3.
Provide a homework assignment notebook
4.
Use a checklist to help student keep organized
Accommodations
of behavior
1.
Reward system for in-school work and homework completion (such as giving
the student extra privileges)
2.
Natural consequences for behavior
3.
Allow breaks between assignments
4.
Give the student an opportunity to verbalize his/her feelings
Accommodations
for groups and peers
1.
Have cooperative learning groups
2.
Provide a peer tutor
3.
Ask a peer to take dictation
4.
Peer modeling of appropriate responses
Here are some examples of modifications, taken from Margaret McLaughlin's book, Accessing the General Curriculum.
Modifications
1.
The student is taught something different from the rest of the class
2.
The student is taught the same information, but at a different level of
complexity
3.
The student has a reduced assignment (for example, has fewer questions
to answer)
4.
Use a lower level reading text book, which covers similar subject content
5.
Expectations of what the student learns will vary based on modifications
agreed to on the IEP (Individualized Education Program)
by Mary Loughlin, Federation's Central MA office
Margaret Marotta Smith has left her position as Associate Director of Special Education Projects at the Federation to become the Evaluation Team Chairperson for the Peabody Public Schools. We wish her only the best in her important new role. We can think of no one more perfect for this position, for she brings not only technical expertise in understanding special education law and in writing IEPs (Individualized Education Programs), but also her tremendous empathy for families of children with special needs.
We will miss Margaret's expertise and special qualities. However, we know that wherever she goes, she will carry forward the important work of the Federation by providing information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. Whenever we see an IEP, we will think of how Margaret helped make positive changes to give parent vision added importance. Whenever we read A Parent's Guide to Special Education, we will hear Margaret's voice guiding us.
From
the Executive Director
Still Waiting--After
All These Years
by
Richard Robison, Executive Director
Federation
for Children with Special Needs
In 1962, thirteen years prior to the passage of IDEA (Individuals with Disabilities Education Act), the first ever President's Panel on Mental Retardation issued its report to President John Kennedy. This report entitled, A Proposed Program for National Action to Combat Mental Retardation, examined the scope, significance, and importance of addressing the needs of individuals with mental retardation and their families. The panel wrote, "mental retardation ranks as a major national health, social, and economic problem," affecting an estimated 3% of the general population, or at that time, 5.4 million children and adults in the United States. The panel enumerated 5 areas where there was an urgent need for extended or new services and urged the President to propose such programs. These proposals were:
1. To enrich learning opportunities for preschool children.
2. To support state departments of education and universities to establish "instructional materials centers" in special education. These centers would provide teachers and other education personnel with competent consultation and support.
3. To develop state and local community leadership that would create new programs for school services for individuals with mental retardation. In fact, they cite "the lack in many state and local school systems of staff experts as a major contributing factor to the general inadequacy of school services."
4. To develop specialized classroom services to support all children, including those with mental retardation. Despite the fact that special education programs had grown over 270% between 1948 and 1958, the number of programs was "grossly inadequate." The panel went on to say "it is doubtful that sound comprehensive programs will be developed in most communities without the incentive of external financial support, such as can be provided through general Federal assistance to schools." In addition, the panel found even new programs and existing services were "deficient" and many failed to accommodate the majority of children in their communities. Staff were inadequately trained, and most failed to provide for the full spectrum of intellectual abilities; and, finally, there were practically no programs, which existed to assist the adolescent or young adult to transition from school to work and community living.
5. To expand or develop all community educational services which provide diagnosis and evaluation to enable the early detection of school learning disabilities.
Fast forward to the year 2002, 27 years after the passage of IDEA in 1975 and 40 years after the presidential report. Congress is required to reauthorize IDEA this year and many groups are identifying aspects of the law that need attention. Legislators on both sides of the aisle agree there are many problems that need to be addressed. At a recent hearing of the Senate Committee on Education, Robert Pasternak, Assistant Secretary of the U.S. Department of Education, testified about the need for more highly qualified special education personnel as well as the need to provide services to the "right children" (which addresses evaluation and diagnosis issues). The National Association of State Directors of Special Education identified 9 issues. Among them are the need to strengthen preschool services, school accountability, the need for a unified system of general and special education, coordination with other agencies, the need to address students with behavior issues, the need for a fairer dispute resolution system, the need for qualified personnel, and the need for full federal funding of IDEA.
The latest edition of the Massachusetts Special Needs Task Force Report, published by the Massachusetts Association of School Superintendents, identified challenges in five categories: 1) increases in the number of children and severity of disabilities of children served in early intervention and preschool programs, 2) numerous changes in the law that require additional paperwork on the part of special educators, 3) the costs of new programs and services, 4) the educational standard students are required to meet to graduate from high school, and 5) a lack of financial support to local schools from state and federal resources. The list of issues goes on, but at the root of many of them is the need for adequate federal financial support.
As many know the original promise of IDEA included the commitment of the federal government to provide "full" funding for IDEA. This was defined as providing 40% of the cost of special education services borne by cities and towns across this country. Most of us also know that this promise has never been met and was at the root of Senator Jeffords decision to realign his political party status. His heroic stance is a glaring reminder that the promise remains unfulfilled. As long as that is true, all children suffer.
Revising IDEA is always a difficult and politically charged issue with potentially high stakes for all involved, especially for parents and students with disabilities. The problems we face are not new, but they are complex. Let us learn from our predecessors and recognize that while problems persist, many accomplishments have been due to foresighted individuals and a prominent Presidential family that took up this cause 40 years ago. After all these years, it's time to end the waiting and see that the promise is fulfilled.
Ask
an Expert!
Empowerment Through
Information
by Phyllis Sneirson Federation Information Specialist
Who
Pays for an Independent Education Evaluation?
At
times, parents may disagree with the school's evaluation of their child's
educational strengths and needs and decide to have their child evaluated
by an independent evaluator. Due to changes in the Massachusetts special
education law, parents wonder if schools are still obligated to pay for
independent educational evaluations. Generally, the answer is yes.
In order for a school to consider paying for an independent educational evaluation (IEE), parents must make their request within 16 months of the school's evaluation and the evaluators must meet state requirements for registration, certification and licensing, and provide assessments that are equivalent to the types done by the school district. Family size and income may also be used to determine whether or not the school district will pay for all or part of the cost of an IEE.
The school district is obligated to pay for an IEE when:
Families may choose not to share their financial information with the school and still request an IEE at the school's expense. In this case the school, within five days of the request, must either agree to pay 100% of the evaluation or initiate a hearing at the Bureau of Special Education Appeals (BSEA) to prove that their evaluation was comprehensive and appropriate. If the BSEA rules in favor of the school, then the school will not be obligated to pay. However, if a family chooses to pay for an IEE, the TEAM must consider the evaluation as they would any other evaluation.
Families can refer to the Massachusetts Special Education Regulation 28.04(5) for further clarification on independent evaluations.
Project
COEP (Community Outreach and Empowerment Project), is a unique parent support
project, funded by the Boston Foundation and operated by the Federation
for Children with Special Needs. Staff of the COEP Project coordinates
support groups for families of children with disabilities. One group, "Familias
Latinas Unidas por el Síndrome de Down," (Latino Families United
for Down Syndrome) is dedicated to sup- porting and empowering families
of children with Down syndrome. The group meets one Saturday a month from
10 am-12 noon at the Federation in Boston. For more information, please
call Diana Rocha at 617-236-7210, ext. 171. In addition, Sandy Blanes and
volunteer Rhea Tavares coordinate a second monthly support group for Portuguese-speaking
parents who have family members with disabilities (see related article
below). An English-speaking support group, with a similar format, is planned
for the near future.
The
community Outreach and Empowerment Project (COEP), patrocinado por Boston
Foundation en La Federacíon para Niños con Necesidades Especiales
apoya al grupo "Familias Latinas Unidas por el Síndrome de Down."
El grupo se dedica a apoyar y aumentar el liderazgo de las familias que
tienen niños con el síndrome de Down. Este grupo se reune
un sábado al mes, de 10 am a 12 pm en Boston. Para más informacíon,
llame a Diana Rocha al 617-236-7210, ext. 171.
O grupo de apoio para os falantes da língua portuguesa no estado de Massachusetts, com o patrocínio do Projeto COEP--Community Outreach and Empowerment Project--está aberto a todas as famílias que tenham crianças, jovens e adultos portadores de deficiência. O Projeto COEP é fundado pela Boston Foundation e operado pelo quadro de pessoal da Federação para Crianças com Necessidades Especiais. Uma vez por mês, as famílias se reúnem na Federação, em Boston, para trocar informações, saber das novas oportunidades e participar nas atividades sociais. Esses encontros têm duas coisas em comum: a necessidade especial e a língua portuguesa. Independente de qual seja a necessidade especial, os falantes de língua portuguesa de todo o estado estão partilhando um lanche e informações sobre as suas deficiências e suas necessidades. Ao final do ano 2001, os membros do grupo de apoio se divertiram numa festa em que o jantar foi fornecido por um restaurante local, o Canestaros Restaurant. Dentre os planos para o ano 2002 estão incluídos: eventos sociais, eleição da administração, palestras informativas e, ainda, a realização de uma Central de Informações dos Membros e Colaboradores da Comunidade de Falantes da Língua Portuguesa com Necessidades Especiais. Maiores informações podem ser obtidas com Sandy Blanes ou Rhea Tavares, no tel. 617-236-7210, ramal 144.
by Becky Rizoli
One afternoon last spring, I was reading a magazine that an acquaintance had lent me. One article, in particular, caught my attention. It was about the various struggles that people with disabilities face. As I read on, I came to a statement that shocked and appalled me. It said that individuals with disabilities are the victims of more discrimination than any other minority.
I can't figure out why people are so intolerant and insensitive towards those with special needs. People with disabilities already have a difficult life, and society compounds their disability by treating them as if they were somehow worth less than other human beings. Why, in the 21st century, does this still happen?
We all know what racism, sexism, anti-Semitism, and homophobia mean. However, when I tried to come up with a similar word to describe discrimination against people with disabilities, I found myself drawing a blank. Although I have heard people call this kind of discrimination "ableism," I could not find it in the dictionary. The English language does not even have a word to describe discrimination against people with disabilities, even though it is a very real occurrence!
This kind of injustice angers me, not merely for social and political reasons, but for personal reasons as well. I have ADHD (Attention Deficit Hyperactivity Disorder), learning disabilities, and an anxiety disorder. Thanks to the laws that protect people with disabilities, I was able to attend my town's public school system, where I received special education services (at no cost to my parents) until I graduated from high school.
In elementary school, I spent the majority of my day in the resource room. I also received speech therapy, occupational therapy and counseling. By my senior year in high school, I was completely mainstreamed and only needed minor modifications to access the general curriculum, such as un-timed testing. I took a number of honors classes and even a few Advanced Placement courses. After high school, I went on to a competitive, liberal arts college, where I completed my Psychology degree in four years. I feel very thankful and fortunate that I was able to accomplish these goals.
However, I know that I could not have done it alone. Without the benefit of special education, I never would have made it to where I am today. Since my parents and I understood my rights under the law, I was able to obtain the services I needed. My educational road was filled with obstacles. There were many times when a teacher or a professor did not want to make accommodations for me, or a supervisor was not supportive about my special needs. Yet, I realize that these obstacles are merely potholes compared to the "Big Dig" of discrimination that some other children and adults with disabilities face.
Discrimination occurs in many forms: from the child with learning disabilities who is denied admission to a private school, to the woman with cerebral palsy who is unable to attend religious services because her church is not wheelchair accessible, to the man with Down syndrome who is harassed by a co-worker. Despite both state and federal laws that prohibit "discrimination on the basis of disability," it continues to exist. I would like to let all people with disabilities and their parents know that there is hope. I encourage parents of children with special needs to familiarize themselves with Chapter 71 B of the General Laws of Massachusetts (also known as "Chapter 766"), Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act. I also encourage them to learn as much as they can about their child's disability, and to let their children know what their rights are as well. Speak out when you feel that your child is being discriminated against and don't give up. Remember, discrimination on the basis of disability is not merely insensitive; it is Illegal. The law is on your side!
Like
Martin Luther King, Jr., I too have a dream. I have a dream that someday
all people with disabilities will be treated with the respect and dignity.
I have a dream that the work we do here at the Federation, and similar
agencies, will continue to make a difference. And most of all, I have a
dream that someday all people will be viewed not by what they can't do,
but by what they can do.
Getting Onboard the 2010 Express
In December 2001, families of children with special health care needs, and professionals from all over the country, came together in Washington D.C. to launch an exciting new initiative called the 2010 Express. The Maternal and Child Health Bureau (MCHB) has collaborated with Family Voices, the American Academy of Pediatrics, the March of Dimes and many other private and public organizations to develop "A Ten Year Action Plan to Achieve Community-Based Service Systems for Children and Youth with Special Health Care Needs and Their Families."
The plan is centered around six core goals:
What an exciting 10 years we are going to have! There are many ways for you, as a family member, to "get on board" the 2010 express. You can participate in focus groups, phone surveys, working groups and many other innovative ways of having your voice heard. For more information on the 2010 Express or the Medical Home, and to learn more about opportunities to be involved in these initiatives, call your regional Family TIES coordinator at 1-800-905-TIES. Don't miss the chance to make a difference in the life of your child as well as the lives of all children with special health care needs.
The above article "Getting Onboard the 2010 Express," lists 6 core goals that specifically address needs and services for children and youth with special health care needs and their families. These 6 goals are part of a larger national initiative, Healthy People 2010, which addresses goals and objectives to determine and develop programs so that everyone lives a healthier life.
The
two main objectives of Healthy People 2010 are to:
1)
Increase an individual's quality of life and years of healthy life.
2)
Eliminate health disparities by improving health for those from varied
racial and ethnic backgrounds.
The goals of Healthy People 2010 (HP2010) began in 1979 when the Surgeon General laid out health objectives for the nation to meet by the year 2000. The goals for the next 10 years were derived from this initial report. Public and professional opinion and guidance were used to revise these goals to reflect today's national health status and needs. Various federal agencies, including the Office of Disease Prevention and Health Promotion, and the U.S. Department of Health and Human Services coordinate the goals of the specific focus areas. More than 400 organizations--health departments, volunteer and private organizations, and businesses formed the 2010 Health Consortium. Consortium members commented on and redefined Healthy People 2000 into today's goals. Other members bring the goals to life by incorporating them into their mission statements, developing health programs in the community, or assisting others to develop programs in their communities.
There are 28 focus areas that detail the specific health goals and objectives designed to meet the two main goals. These focus areas include: disability and secondary conditions, environmental health, family planning, maternal, infant, and child health, mental health and mental disorders, nutrition and overweight, oral health, and others.
The Maternal and Child Health (MCH) Bureau has developed six specific goals related to children with special health care needs. For more information, call Family TIES at 1-800-905-TIES or visit the MCH website at www.mchb.hrsa.gov/programs/specialneeds/ measuresuccess.htm.
To learn about specific activities, which are occurring in Massachusetts, contact the Massachusetts Consortium for Children with Special Health Care Needs. This consortium, part of New England Serve, holds bi-monthly meetings to assess how well the 6 goals for children with special health care needs are presently being met, and to devise plans to address next steps. A dynamic group of families, physicians, policymakers, and others, share ideas, information, and inspiration. If you'd like more information, please contact Alexa Halberg, at NE Serve at 617-574-9493.
As an individual, or a family, you can work to live a healthier lifestyle and/or choose a health care provider and health plan to meet your needs. Visit www.healthfinder.gov for information on health topics or health care organizations that can help you make healthy choices for yourself and your family. En español vaya a www.healthfinder.gov/espanol/. As a community or an organization, you can integrate goals into meetings, forums, publications or events, and/or collaborate with groups already working on HP2010 projects. Become a HP 2010 partner by e-mailing hp2010@osophs.dhhs.gov.
For more information about Healthy People 2010 or the 2010 Health Consortium visit www.health.gov/healthypeople or call (800) 367-4725.
MassCARE Honored at DPH Day Celebration
The MassCARE program was recently honored at the Massachusetts Department of Public Health's DPH Day Celebration. MassCARE was one of twelve programs from across the state chosen in recognition of its achievement.
The event took place on December 11, 2001 at the State Capital, and was attended by roughly 500 Department of Public Health Staff and community members. Dr. Howard Koh, the Commissioner of the Department of Public Health, praised the program for its longevity and dedication to families affected by HIV. He noted that many of the MassCARE staff members have been with the program through its entire 10-year history!
Many MassCARE staff members were able to attend the awards ceremony. Donna Costa, Leticia Lopez, Donna Picard, Linda Besse, Fernanda Gudino-Valentin, Hayley Arnett, Gayle Hearns, Valerie Brown, and Debbie Allen were all recognized. Donna Picard spoke for the group and told the audience about MassCARE's beginnings and the HIV+ children they treated years ago when the program was starting. Those children have now grown into healthy teenagers, and MassCARE continues to provide them services.
Update from Mass Family Voices
Massachusetts Family Voices provides support to parents as they seek to improve the quality of health care for their children with special health care needs. To follow up on the many parent activities in this state during the past year, and to provide continued support to parent leaders, Massachusetts Family Voices is planning a June meeting. Further information will be posted on the Mass Family Voices website (massfamilyvoices.org).
New
Publications Available
Last
year parents in Massachusetts, along with parents in 11 other states, participated
in a national Family Voices project. Parent interviewers met with staff
of managed care organizations and spoke about programs and policies for
children with special needs. Three reports on the interviews are now available.
Contact Connie Sun at csun@fcsn.org
for your copy.
When Choosing a Residential School-- The Importance of Appropriate Licensing
by Andrea Watson, Project Coordinator PFRR, and Attorney Tim Sindelar, Disability Law Center, PFRR Advisory Board Member
When families place their child in a residential school or group home (group care), they are placing the life of their child in others' hands. Safety, as well as appropriate service delivery, should be their highest priority. Appropriate licensing is crucial when choosing a residential placement. The Office for Child Care Services (OCCS) should license all residential placements, even if they're 766 approved. This ensures that these facilities meet the same standardized objectives and criteria that other facilities, which serve children, especially children with special needs, must meet.
Even though PFRR would like to see an increase in these standards, an OCCS-licensed program at least meets minimum qualifications to serve this population of children. Programs without OCCS licensing may not be appropriate.
OCCS sets standards on restraint, medication, staff qualifications, staff to student ratio, intake, service planning, nutrition planning, equipment, education services, behavior management, clothing, room assignments, grooming/hygiene, money, visiting, mail, telephones, runaways, transportation, building safety, physical plant and equipment, physical facility/architectural barriers, living units, access to records, criminal background checks for employees and much more. OCCS staff monitors the programs, and also provides information to parents and others, when requested. Complaints will be investigated. For more information, go to our website at www.pfrr.org, e-mail us at pfrr@fcsn.org, visit the OCCS web site at www.qualitychildcare.org or call them at 617-626-2000.
A residential school should also be 766 approved. This means the program meets the Massachusetts Department of Education (DOE) standards to provide special education services to your child on an IEP (Individualized Education Program), follows the curriculum frameworks, provides access to the general curriculum and also complies with standards for health, welfare, and safety. This approval is granted through Program Quality Assurance Services (PQA) at DOE. If you want information about a particular school, want to file a complaint of non-compliance of an IEP, or have health, welfare and/or safety issues to report, contact the PQA at 781-338-3300. The staff is always helpful and willing to provide assistance. You can also go to the DOE website at www.doe.mass.edu.
PFRR is now posting the most recent DOE progress reports about 766-approved residential schools on our site at www.pfrr.org. If you need assistance, or would like more information, please call our hotline at 1-800-672-7084 or e-mail us at pfrr@fcsn.org.
This information was taken from The Parent Training Guide to Recreation developed by "LIFE: A New Direction"-- a project sponsored by the Center for Recreation and Disability Studies Curriculum in Leisure Studies and Recreational Administration at the University of North Carolina at Chapel Hill.
Further information is available in Summer Fun 2002 available on our web site: www.fcsn.org.
What
To Look For In Camp
Programs
If you are considering sending your child to camp, you need to make some
decisions about the type of camp that is most appropriate, and gather information
about the camps that offer this type of experience.
Do you want a day camp or residential (sleep-away) camp experience for your child?
Day
Camps
Day
camps offer a wide variety of recreational activities, which may include
music, arts and crafts, swimming and other sports, field trips, etc. These
activities are designed to promote your child's mental, physical and social
development. Programs may run all-day or half-day, five days a week, or
two to three days a week, all summer or only a few weeks. Advance registration
and a physical exam, with the child's complete medical history, are usually
required. Day camps are generally designed for children, age 5 and older.
Program offered by local community or municipal recreation departments
usually charge a minimal fee. Most private agencies charge a higher fee,
although they may be willing to reduce the fee based on financial need.
Residential
Camps
Residential
(sleep-away) camps are those in which your child may spend several days,
two weeks, or the entire summer away from home. This type of program can
provide a unique living experience for a child with a disability. In addition
to some of the same activities available to day camps, sleep-away camps
enable children to live together in cabins under the supervision of qualified
staff. A major emphasis of these programs is to increase the independence
and self-help skills of each child. Ages tend to range from 5 to 16; most
camps do not accept teenagers over 17 or 18. Advance registration and a
complete physical examination are usually required; a formal interview
may be necessary. Fees are generally charged; however, a scholarship program
may be available to those with financial needs.
"Special"
Vs. Integrated
There
are day and residential camps only for children with disabilities and camps
where a child with a disability is included with children who are non-disabled.
The experience that is best for your child depends on his/her abilities
and interests, social skills, and what you think the maximum benefit from
each situation will be.
General
Information
General
information about a camp can be obtained by contacting the camp directly
through mail, e-mail, by telephone, or by a visit to the camp's website.
For your convenience, links for many camp websites are available at www.fcsn.org.
Book Review-- Rethinking Special Education for a New Century
by Martha Ziegler, Founder Federation for Children with Special Needs.
Policymakers, especially those in Washington DC, are studying a recent book about special education entitled, Rethinking Special Education for a New Century. Edited by Chester E. Finn, Jr., et al. and published by the Fordham Foundation and the Progressive Policy Institute, the book features a preface by Madeleine Will, parent and former Assistant Secretary of Special Education and Rehabilitative Services.
This book is especially interesting and thought provoking because it takes a good look at special education from a somewhat distant vantage point, enabling the various authors to take a truly fresh look at special education as a national system. While I do not agree with every detail expressed, I do find much merit in the book; the editors urge us to shift from a "compliance paradigm" to a standard that emphasizes outcomes and accountability, without sacrificing the fundamental rights of the children and parents the law protects.
One of the six concluding recommendations presented by the authors includes, "Provide adequate funding to ensure the program's success, assigning to Washington full responsibility for funding the education of the country's growing population of severely disabled students." The first half of this recommendation is one that just about everyone agrees with, but the latter half probably stems from limited understanding of the complex interactions of child assessment, state and local funding mandates, rapidly changing educational practices, and uncertain definitions of such terms as "severely disabled."
I am hopeful that the new Director of the Office of Special Education Programs at the U.S. Department of Education will use this book as a starting point to initiate a major review of the federal law, culminating two or three years from now with recommendations for change that will increase the quality of our children's education and soften some of the backlash that periodically arises.
Meanwhile,
I urge parents, teachers, administrators, and policymakers to read this
important book. It is available on the Internet at www.edexcellence.net,
or a free paper copy can be ordered by calling 1-888-823-7474.
The Federation wishes to extend a warm welcome to its new associate executive director, Sara Miranda. Sara has a long history of involvement with the Federation, serving as a member of the Board for over ten years. She also brings to the Federation a vast knowledge of social services, especially as they pertain to children with special needs. Specifically, Sara has worked in the field of developmental disabilities and special health care needs since 1978. Sara trained as a clinical social worker at the Developmental Evaluation Center at Children's Hospital in Boston. She worked at the hospital for eleven years, directing the Down Syndrome Program, providing social work services for children with special health care needs and serving as the Director of Social Work for the Institute for Community Inclusion.
While at Children's, Sara also helped begin the Parent-to-Parent Program at the Center for Families. Additionally, Sara was a member of the Board of Directors for the Massachusetts Down Syndrome Congress for twelve years and was involved in their First Call program, Brothers and Sisters Workshops and Young Adult Conferences. Sara was a co-founder of the Latino Down Syndrome Parents Group, which today meets monthly at the Federation. Sara has also worked with families involved in adoption of children with special needs.
Prior to accepting a position as an assistant executive director at the Federation, Sara worked at the North Shore ARC, managing the autism programs. These included an intensive early intervention program for children with autism/PDD, the Autism Support Center and an in-home behavioral and family support program. With this extensive array of experiences dedicated to improving the services available to families with children with special needs, Federation staff anticipates the wonderful contributions that Sara will make to the Federation, and looks forward to a long partnership with her.