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California Department of Education, Special Education Division’s special project, California Services for Technical Assistance and Training (CalSTAT) is funded through a contract with the Napa County Office of Education. CalSTAT is partially funded from federal funds, State Grants #H027A080116A. Additional federal funds are provided from a federal competitively awarded State Personnel Development Grant to California (#H323A070011) provided from the U.S. Department of Education Part D of the Individuals with Disabilities Education act (IDEA). Opinions expressed herein are those of the authors and do not necessarily represent the position of the U. S. Department of Education.
Winter/Spring 2009 Volume 22, Number 2
By Nora Thompson, Executive Director, Matrix Parent Network
If you are the parent of an infant or toddler with disabilities, you are probably
receiving early intervention services through California’s Early Start program.
And you may have heard someone mention the “transition” that occurs when your
child turns three years old.
“Transition to where?” you might ask. “Where are we supposed to be going? We’ve only just gotten settled with all of these people who are helping my child and my family.”
Your service providers have most likely become a regular and familiar part
of your life. You finally understand some of the dozens of abbreviations and
terms floating around, such as IFSP, PT, OT, service coordination—the list
can seem endless, but it is finally feeling almost natural. And now there is
this talk about transition. It is almost as if a buzzer suddenly sounded and
you are being directed out the door of a world that was just starting to become
Transition is generally defined as “the passage from one place or condition to another.” It is a process can be frightening and exciting at the same time. As it applies to families of children receiving early intervention services, transition in general means leaving a familiar pattern of services and moving into another way of doing things.
You may wonder why you have to make changes in the first place and why the magical time for them to happen is when your child turns three. The answer lies with the Individuals with Disabilities Education Act (IDEA), a federal law that ensures that all children, regardless of their degree of disability, will have access to a free and appropriate public education (FAPE) in the least restrictive environment (LRE). This law has two important sections: Part C, for infants and toddlers, birth to thirty-six months; and Part B, for children ages three to twenty-two. So, once your child turns three, the law requires your child—and you—to leave the Early Start program with its Individual Family Service Plans and service coordinators (Part C of IDEA) and move to the Individualized Education Program (IEP) for preschool-age and school-age children (Part B of IDEA).
Most Part C service providers will not simply push you out the door into a
preschool and leave you stranded. But before this specific transition takes
place, you will want to gather information, think carefully about your options,
and make plans. The strategies that I discuss below will help make your shift
smoother. And there are preschool service providers who will build relationships
with you on the other end.
First, there are a few things you will want to know.
The services your child starts receiving under IDEA’s Part B will look different
in a number of ways. Typically, Part B services are not delivered to your child
in your home, as they have been under Part C, but rather in a preschool (and
then in a K–12) classroom setting. As a parent, you are still a very important
part of a team that supports your child. But under Part B there is less emphasis
on the needs of the family; the focus shifts to what the child needs educationally.
The central vehicle for this educational support is the IEP that you and your
child’s teachers (and service providers) will work to develop for—and eventually
with—your child. Your particular task is to bring to the team your unique perspective
and knowledge as a parent. While you may not yet know all of the special education
acronyms or the ins and outs of the Part B system, you do know your child better
than anyone else. Your understanding, insight, hopes, and dreams for him or
her are truly important. It is critical that you share them.
Each IEP team member contributes information about your child and his or her development, needs, and strengths; and then the team creates the most appropriate educational plan for your child. Don’t forget that you won’t have to figure this out all by yourself. You are part of a team.
The next important thing to know about this transition is that Part B has eligibility requirements that are difference from those of Part C. The reality is that some children who receive special education services in Early Start do not qualify for preschool services. This makes it critical that you talk to your service coordinator about where your child is likely to fit under Part B. If he or she is not eligible for services, you will want to look at other early childhood options to support him or her. These might include Head Start, state preschools, family childcare providers, and other private or community-based preschools. Most of these are options whether your child continues to be eligible for special education services or not. Your service coordinator or your local resource and referral agency can help you identify the early childhood resources that are in your community (www.rrnetwork.org).
So, armed with some basic information, are you prepared to face the change? Most of us are not. Change can be frightening, especially when it involves going from the known to the unknown—and even more frightening when it involves our children. For whatever reason, this change is harder for some folks than for others. Certain parents can take change and uncertainty in stride, viewing them as part of a new, great adventure; others feel fear and trepidation but go along without much outward evidence of their struggle; and still others resist any change as long as they can, kicking and complaining the whole way. So perhaps the next most important thing for you to do is try to learn about yourself. Your transition from Part C to Part B services gives you a perfect opportunity to reflect on your own style for managing the unknown. You can help yourself—and your child—when you are able to bring a degree of self-awareness to the process.
Then, whether or not your child qualifies for services under Part B, the next important thing to do, regardless of the kind of disability your child has, is learn as much as you can about typical child development. Children with disabilities go through the same developmental progression as children without disabilities, although perhaps at a different pace or by using different strengths. All parents of young children, though, have common concerns about such things as toileting, bedtime, eating, and sibling relationships. Being familiar with developmental stages and milestones will help you know what to expect—and will help you advocate for a high-quality preschool program that supports your child’s development.
Warning!! During times of change and stress, some of the confusing, uncomfortable feelings that you may have experienced when your child was born or diagnosed with a disability can return. These feelings of sadness, depression, isolation, or anger are often retriggered in times of uncertainty, and especially during the potentially stressful times of transition. Recognize that these feelings will not last forever and that they are part of the normal grief cycle. Also try to keep in mind that there will be many more transitions for you and your child as the future unfolds. Each one is an opportunity for learning new information that will help you build your skills and confidence in supporting yourself and your child and in managing change.
So what practical things can you do to prepare yourself and your child for the transition from Part C to Part B services? Seven things have helped me as the parent of a child with a disability:
Often, in our efforts to learn everything we can to help our children navigate the world, we feel as though our lives are swirling out of control. When I begin to feel this way, I start putting things in a to-do list. While I will confess that the act of making the list is sometimes as far as I get, just doing it helps me feel more organized and less helpless. And it helps me believe that the world of special education is manageable.
Gathering information, asking countless questions, and connecting with other families are all strategies that will help you prepare for the important transition you and your little one are about to make. So get ready, get set, go! Enjoy the adventures that lie ahead.
And remember to breathe!
This issue of The Special EDge focuses on resources for parents and guardians of students with disabilities. Such adults have a keen appreciation for the complexity of the system through which they are helping their children navigate, as well as the challenges involved in helping their children meet academic goals.
Sadly, there are many students with special needs for whom no parent can be
identified or located, who have become wards of the state, or who are homeless
and unaccompanied. To protect the rights of these children, to assist in meeting
their individual needs, and to improve their educational outcomes, both federal
and state statutes and regulations recognize the necessity for surrogate parents.
A surrogate parent is an adult appointed by a local educational agency (LEA)—often in response to a court order—to represent a student whenever the student does not have parental representation and has been referred for, or is currently being served in, special education.
As a first preference, an LEA will select
a relative who is the child’s caregiver, a foster parent, or a court-appointed
special advocate. If none of these persons is willing or able to serve, another
qualified person can be appointed to serve as a child’s surrogate parent.
LEAs must appoint a surrogate parent within 30 days of a determination that a student requires one. The agencies are therefore more likely to be successful if they have an ongoing process for recruiting, screening, and training a pool of candidates to fill this important role.
By law, the surrogate parent assumes all parental rights in the process of developing and implementing an individualized education program (IEP). The surrogate parent represents the child in all matters of education including, but not limited to, identification, assessment, instructional planning, educational placement, reviews and revisions of the IEP, and the provision of a free, appropriate public education (FAPE).
Adults who choose to become surrogate parents make a significant investment of themselves and their time. In order to optimally represent a child, these adults need to learn about the special needs of the child to whom they are assigned and the effects of the child’s disability on his or her learning. Surrogate parents are also called on to be culturally sensitive to the child, as well as to know special education requirements, procedural safeguards, and resources within the educational community that can assist the child.
The role of a surrogate parent lasts until the child no longer needs special education services or reaches the age of eighteen. There are exceptions, however, and the role can be maintained if, when the child turns eighteen (the age of majority), he or she chooses not to make educational decisions; or if the child is legally determined to be incapable of making these decisions. On the other hand, the tenure of a surrogate parent can be shortened if another responsible adult is appointed for the child, or if the right of the child’s parent or guardian to make educational decisions is fully restored.
For more information about becoming a surrogate parent, you may wish to peruse
the California Department of Education, Special Education Division’s manual:
Parents in California Special Education: An Overview. The manual is available online at www.cde.ca.gov/sp/se/sr/surrogateparents.asp.
Parents today are involved in the education of their children in ways that reflect a dramatic change in attitude in just a single generation. Within easy memory, if parents dropped their children off at school and voted for school bond measures, they considered their educational obligations complete. Today, the intense involvement of many parents is reflected in—and perhaps somewhat precipitated by—research conducted over the past few decades. The countless studies and reports on this topic most often arrive at the same conclusion: “Family involvement in education predicts children’s school success.” [Co-Constructing Family Involvement,” www.hfrp.org/evaluation]. Parents, educators, and policymakers almost universally now believe that, regardless of the degree or nature of parent involvement, its effects on the child are positive. And policymakers are committed to measuring this involvement and making it part of their planning.
For parents of children with disabilities nationwide, involvement in their child’s education has been part of the formal educational landscape since the advent of the Individualized Education Program (IEP) in 1975 with the passage of Public Law 94-142. The centrality of this involvement has been sustained in the Individuals with Disabilities Education Act (IDEA) of 1997 and its subsequent reauthorization in 2004. In fact, the active participation of parents in the IEP is a principal tenet of IDEA.
The Special Education Division of the California Department of Education (CDE) shares this commitment to parents, one that is reflected in the way it is designing its State Performance Plan (SPP). All state-level planning in special education needs to be tied to this SPP. As the plan is currently taking shape, it reflects a commitment to the importance of parent involvement specifically in its Indicator 8, which tracks the “percent of parents with a child receiving special education services who report that schools facilitated parent involvement as a means of improving services and results for children with disabilities.”
Previously CDE has relied on diverse planning groups to address such things as personnel development, monitoring and accountability, and fiscal management. In order to create a unified process for developing the SPP, in January of 2007 the CDE folded the Partnership Committee on Special Education (PCSE) and the Key Performance Indicator Stakeholder Committee (KPISC) into the Improving Special Education Services (ISES): Through Planning, Personnel Development, and Performance Reporting Group. For the makeup of this group, the CDE sought individuals who possessed relevant expertise in education and who could guide activities and provide recommendations on targeted improvement activities for all aspects of the SPP. ISES currently boasts 17 parents and representatives of parent organizations as members.
Central to the task of fulfilling the terms of the SPP is that of gathering
data about the state’s system of special education in general and the involvement
and satisfaction of parents in particular. The CDE does this in a number of
As part of its Quality Assurance Process, the Special Education Division (SED) of the CDE requires school districts to participate in a self-review of every school in the state every four years (a review that is in the process of being changed to take place every year). This structured review gives the schools an opportunity to examine their special education programs and determine their effectiveness.
These reviews involve parent input meetings, with some schools training parents to facilitate these information-gathering sessions in order to make the meetings more parent-friendly. Surveys are also distributed to all parents of children with IEPs. The meetings and the survey together are designed to gather information from parents about their involvement in their children’s IEPs and the support the schools have provided in this involvement (www.cde.ca.gov/sp/se/qa/documents/spp0506.doc). These data are then incorporated into the monitoring plans for the schools and help to direct efforts to promote parent involvement. As part of this same review, parents have to agree that the district has appropriately gathered and interpreted the data and that the district’s monitoring plan accurately reflects that data.
Currently, the SED is working to make its data-gathering efforts even more focused. According to SED manager Chris Drouin, “What we are getting now is ‘yes or no’ responses on whether or not the districts are viewed as supporting family involvement. And on that count, we register a relatively high rate of satisfaction. But we want qualitative data that go beyond that—data that give us specific, meaningful information about parent involvement.” The CDE is working with representatives of Parent Training and Information Centers (PTIs) and Family Empowerment Centers (FECs) and with administrators from Special Education Local Plan Areas (SELPAs) to create a vehicle for gathering additional information so that school districts can more specifically address the needs of parents and enhance their involvement. Whether or not this new parent survey is administered through SELPAs or through parent centers remains to be seen. But clearly CDE is trying to gauge the needs of parents—and ultimately to improve educational opportunities for their children.
CDE’s Procedural Safeguards and Referral Services (PSRS) unit is another important source of information for CDE about parents—and an important service for parents. PSRS provides parents and educators with information and resources related to procedural safeguards and educational rights for students with disabilities between the ages of three and twenty-one. The unit receives more than 10,000 phone calls each year. In addition to providing support for the parents who call, the CDE collects and tracks data from these calls and uses that information in its ongoing effort to monitor schools and help them improve their effectiveness.
In addition to ISES, two key state advisory groups actively seek parent involvement. California’s Advisory Commission on Special Education (ACSE) is one such organization. ACSE’s charge is to give recommendations and advice to the State Board of Education, the State Superintendent of Public Instruction, the legislature, and the governor on new or continuing areas of research, program development, and evaluation in special education in California. (Any parent interested in learning more about serving on this commission can call the CDE’s liaison to ACSE, Anthony Sotelo, at 916-327-3545).
California’s Office of Administrative Hearings (OAH) is another organization that values direct parent participation. The OAH provides a formal, legal venue for trying disputes about special education services. It has created a Special Education Advisory Committee that makes recommendations for improvements to the special education hearing and mediation process, as well as to numerous other OAH functions. This advisory committee is made up of a southern and a northern region, and at least five members in each region must be parents of students with disabilities or those who represent these parents.
CDE support for the involvement of parents extends in several additional directions. At WestEd, for example, state money was used to include parents in developing materials that support educating children in the least restrictive environment (www.wested.org/cs/we/view/pj/204). In addition, the California Comprehensive Center (CA CC) at WestEd is working with CDE to implement the terms of the No Child Left Behind Act by increasing parent involvement to support the achievement of students in schools (www.cacompcenter.org). With the assistance of the CA CC and substantial input from the Family Area Network Board, CDE is examining school, family, and community partnerships, which are requirements across a variety of education programs. The intent is to provide resources and tools to support the integration of parent involvement programs and activities in schools, essentially delineating what schools, districts, county offices of education, and state departments of education should be doing to support parent involvement in all areas. A third state-funded source of parent activity can be found at Napa County Office of Education, where the California Services for Technical Assistance and Training (CalSTAT) project has been working for ten years to make parent involvement a central feature of its school leadership activities (www.calstat.org/buildingFamily.html).
Throughout the state, numerous parent centers provide resources and supports specifically to parents and families of children with disabilities. These centers have received backing from CDE for decades (www.cde.ca.gov/sp/se/qa/caprntorg.asp). One of the specific activities that ISES endorsed as part of California’s SPP involved grants to parent training and information centers (PTIs) and family empowerment centers (FECs) to increase the involvement of underrepresented parents in Community Advisory Committees (CACs).* Marta Anchondo, executive director of TASK (Team of Advocates for Special Kids), a Los-Angeles based FEC, is passionate about the importance of CACs, and even more passionate about parent involvement. Even though this particular funding source ended in February 2008, Anchondo is still recruiting parents. As she reports, “We are constantly trying to boost CACs, and we work hard to build up relationships with them. We travel all over the area we serve, providing help for families to become part of these advisory bodies.”
CDE and ISES have ensured that the funding for this kind of activity continues, however, under a different guise. Currently, five PTIs across the state are receiving comparable monies to give stipends to families through the Family Participation Fund with the purpose of helping parents of children with disabilities participate in a wide range of advisory and decision-making bodies at the school, district, and state levels. This fund supports opportunities for parents to become knowledgeable about services, act as effective advocates for their children, and positively influence the educational system—all with the ultimate goal of improving outcomes for students with disabilities (www.calstat.org/familyPartFund.html).
Clearly, for parents of a child with a disability, the term “parent involvement”
can have several layers of meaning. Parent-professional Dr. Linda Blong speaks
of three domains of involvement for these families.
In the first—and the most common—the parent works directly with the child and for the child—at home, in school, and during out-of-school-time activities. This involvement essentially consists of any effort that supports the learning and improved performance of the child. The second domain involves parents supporting other parents and families. While most families do this to some degree, families of children with disabilities are especially well organized in this domain—and especially helpful. The third domain of involvement refers to parents serving as active members of advisory committees, commissions, and boards—any group or effort designed to directly or indirectly influence educational and disability-related policies and activities at local, district, state, and national levels.
According to Blong, people often see these three types of involvement as “levels,” with one “higher” than another, and with parents naturally “progressing” from one level to the next. She does not agree with this assessment, however. Instead, she views each level as a separate domain that requires its own unique strengths and talents, and she considers each type of involvement as important in its own way.
In general, parents of children with disabilities who want to make a difference
in the education of their children know that the place to start is in the IEP—that
first domain. Parents
interested in becoming active in the second domain—on either the giving or receiving end of parent training, information, and support—will want to contact their area parent centers (see the insert to this issue). And those parents who are interested in influencing policies, procedures, and activities at local, district, and state levels—the third domain—will find those same parent centers to be their best starting place for gaining the knowledge and experience they need to be active contributors to large-scale decisions made in the field of special education.
In the experience of ACSE commissioner and parent Laureen Sills, “When parents feel included and empowered, they stop seeing the system as a problem and start seeing it as a part of the solution.” CDE shows itself to be a system that is of one mind with Sills and that places great value on parent involvement in all three domains. It looks to parents and parent organizations—and the world of insight and experience they embody—as partners in the effort to educate California’s children with disabilities.
“Some Effects of Parent Involvement in Schools,” at www.cse.ucla.edu/products/reports/R138.pdf.
For dozens of studies that address the importance of family involvement in schools, go to the Harvard Family Research Project at www.hfrp.org/publications-resources/publications-series/family-involvement-research-digests
CalSTAT, a special project of the California Department of Education, Special Education Division, is announcing its 2009–2010 Regional Institute Host Site Award Competition with two goals: identifying regional sites that would like to deliver high-quality professional development and training, and then providing them with the resources to do just that.
A Regional Institute is a locally sponsored, professional development event designed to create an ongoing learning community, sustain and expand system change efforts to close the achievement gap, encourage and support meaningful family involvement, expand the capacity of the school-site teams that attend, and identify and share successful practices. These outcomes are in turn supported by four guiding principles that inform the design and delivery of the institute: adopting a whole-system approach, building connections over time, emphasizing shared leadership and capacity building, and delivering high-priority, school-focused content aligned with identified State Performance Plan (SPP) indicators for the region. (Please visit www.cde.ca.gov/sp/se/qa/documents/consolspp.doc for a list of the indicators.)
Applicants must meet three criteria: be a district, public education agency, or a collaborative that includes a public education agency; have the infrastructure in place to handle event logistics and marketing; and incorporate a middle and high school focus within its message. The institute will include sites that are nonprofit nonpublic schools and public charter school sites among the eligible participants.
The benefits are numerous: $5,500 for each day of an institute (up to two
days) to cover any costs related to
hosting an institute; $2,500 for each day of an institute
(up to two days) to cover scholarships and stipends; $400 each day for up to five days of follow-up technical assistance and training; $500 for support to create a Regional Institute Web page to be posted on the CalSTAT Web
site; and more.
If you are interested in applying, please contact Marin Brown at firstname.lastname@example.org. Applications and information are available at www.calstat.org/about.html.
Laura Wasco saw signs of her son’s autism at six months; the diagnosis was
confirmed when he was two. A concerned parent seeking the best course for her
child, she enrolled him in an infant-toddler program for children with special
needs and followed up with a preschool program when he turned three. When Russell
Ranch Elementary School in the Folsom-Cordova School District started a special
autism program, the Wasco family knew that it
was the right place for their boy when it was time for him to attend kindergarten.
“My goal was to see that he got a lot of special attention,” Wasco recalls.
To that end, she has become an active force in the education of her son and
other children with special needs. Volunteering at the school where her son
is now in first grade, staying in regular communication with his teachers,
and serving on two community advisory boards, Wasco is just the kind of parent
that school officials say makes their job easier.
“No one knows the child as well as the parent,” says Kathryn Allaman, principal of Folsom High School. “Partnering with parents helps us provide the best possible education.” Parents are very valued partners, agrees Georgianne Knight of the Special Education Division of the California Department of Education. “We need that voice.”
The opportunities to use their voices—and be heard—are available to parents from the birth of a child with special needs until that child graduates with a high school diploma or until the age of twenty-two. With its Parent Training and Information Centers, Community Parent Resource Centers, and Family Empowerment Centers, the state provides the information and training that enables parents to be advocates for their children with disabilities and other special needs. Armed with information, an open-door policy at the schools, and their own passion for the welfare of their children, parents are getting involved at all levels of the educational system.
Erin Grettenberger is a special education teacher and infant development specialist who runs a program in the San Diego School District for children with special needs from birth to age three—a period during which it is important for the parent to establish a relationship with the child. “A disability can overtake everything,” says Grettenberger. “We teach them that this is not a project; this is your baby.”
“We are partners with parents,” she says. “We are trying to teach them so they can communicate and play with their babies.” In addition to the on-site services of speech, physical, and occupational therapists, parents have a private, closed-door support group—no teachers invited—to discuss issues, share information about services, and “calm each other about an upcoming first IEP,” Grettenberger says.
Nancy Deutsch, a clinical social worker in San Diego, meets monthly with parents of preschool children with special needs “to make parents feel empowered to make decisions and get their children ready for learning. If parents are better educated, they can ask better questions; they won’t be intimidated.” And, sometimes, Deutsch adds, “They can educate the staff as well.”
Once a child enters school, the parents’ first encounter with the system is likely to involve the IEP process. “This brings parents to the school,” says Allaman. “The process allows them to meet individual administrators and teachers and makes them feel more connected to the school. They feel comfortable calling, and they know whom to call when they have questions or issues.”
At Ranchero Middle School in the San Bernardino district, parental participation is “encouraged on all levels—academic and social,” says Theresa Jones, special education department chair. “We encourage parents to come on campus, and we offer training in what we teach in the classroom so that they can support the students from home.”
Jones says it is very important to have different adults working with the
children. “When families offer support in academics, we as teachers can see
the benefits of that. We’re not keeping statistics, but we see that the more
parent support, the more successful the student.”
At Clairemont High School in the San Diego district, nearly 20 percent of the students have a disability or some type of special need. Although the majority is mainstreamed, the school still makes an extra effort to encourage contact between the special and general education pupils. Twice a week a special needs student is paired with a general education student in a program called Circle of Friends. Jeri Gurley, whose 16-year-old son has Down’s syndrome, is the parent coordinator of the program. “There’s no teaching involved,” she says. “It’s just about being friends.”
Parents donate time and supplies for Circle of Friends—just one of the many
ways they support their children and
the school, says Vice Principal Anne McCarty. “We recruit all parents to help in the classroom,” but she says that when parents of students with disabilities are able to participate, they establish special connections with teachers, connections that can be used to communicate timely information about student needs and other educational issues that may arise.
Not all students with special needs—whether or not on diploma tracks—will leave school when they turn eighteen. California state law requires that they be served with an IEP until they are twenty-two. Colleen Harmon is a resource teacher at TRACE (Transition Resource for Adult Community Education), a program in the San Diego district that serves eighteen- to twenty-two-year olds. The mission of TRACE is to ensure that all students, regardless of their disability, are capable of living, working, and participating in their communities. The program, Harmon says, focuses on vocational skills, adult education, advocacy, and general life skills.
Because these students must be treated as adults, the parental role is more
complex. If the student does not have a conservator, Harmon says, “We have
to go with what the student wants. But
the student will be more successful if the parent is on board. We hope parents will participate in the IEP process; we want input from the family.”
When students leave the program at twenty-two, those with severe disabilities are most likely to transfer to one of the state’s regional centers, many for
life. At TRACE, that is approximately half of the clients. During the final year, parents visit the adult agencies where their children will live. “This is a huge transition for parents,” says Harmon. “So protective at the beginning, they are letting their kids grow up. This is really hard to do when you have a child with a disability.”
From the infant and toddler program, through elementary, middle, and high school, to programs like TRACE, parents are a key component of their children’s education. Programs and schools throughout the state are working to make a place for parents—and parents seem to be more than eager to fill those places. —Janet Mandelstam
Ten years ago, Kristin Wright’s daughter Shelby was born with a long list of disabilities: Pierre Robin Sequence—a cluster of birth conditions that include a small lower jaw, cleft palate, breathing problems, and a tendency for the tongue to “ball up” in the back of her mouth; arthrogryposis, which involves bilateral contractures in both her upper and the lower extremities; and a still-undiagnosed neuromuscular disorder.
Wright and her husband were expecting a typically developed infant, and Wright readily acknowledges her shock, heartbreak, and confusion in the face of what Shelby presented. Perhaps at that point, what Wright really wanted to do was simply go to bed, pull the covers up and over her head, and stay there. It would have been a very human and understandable impulse. But Wright is clearly made of pretty stern stuff. With the support of her family and a drive to move forward, this young Sacramento professional quit her job—and went to work in a different way.
Because of Shelby’s unique neurology, she required constant rocking and singing for the first three years of her life. So that is what Wright did, being spelled by her husband and eventually her mother. But when Wright wasn’t in the rocking chair, she was on the phone with dozens of medical experts and countless therapists. Wright clearly had more hopes and higher expectations for Shelby than the doctors initially did, and she has worked tirelessly over the past ten years to discover what Shelby needs in order to develop to her fullest potential—and then provide it. Seven surgeries and countless hours of rocking and rehabilitation and therapies later, Shelby has not disappointed. She has progressed well beyond what was predicted for her at birth.
But Wright doesn’t expect nearly as much from her daughter as she does from herself. “We’ve figured out a lot of what Shelby needs and have put in place a good system of supports for her. She has a solid rhythm to her life. I can now relate to her on an emotional level that didn’t seem possible when I was so consumed with figuring things out.” Wright says she feels like she can now finally take a deep breath. In the process of figuring out a great deal about Shelby, however, Wright has also learned about the system of special education in the state. She has become one of California’s supremely involved parents.
Wright began this new career at Sacramento’s Infant Development Program. There, Shelby received the services she needed; and Wright was given the support, information, and friendships that helped her navigate the world of her daughter’s disabilities. The program’s director, Gary Scott Johnson, encourages all parents who come through his doors to work to make a difference in the larger special education community. So Wright proceeded to become a member of her local school district’s Community Advisory Committee (CAC), and after two years became that organization’s chair.
In 2006, she was appointed by the State Senate to serve on California’s Advisory Commission on Special Education for four years—and now has become that organizations chair, as well. Most of us would have stopped some place well short of this level of involvement. But Wright has generalized the commitment she has for her daughter in a way that keeps inspiring her to action. Two years ago she enrolled in Sacramento State University to become a special education teacher for children with moderate to severe disabilities. She is currently doing fieldwork in transition and plans to have her credential by December of this year. She will then take what Sac State—and Shelby—has taught her into the classroom.
These days Wright’s voice still gets a little faint and very tender when she talks about Shelby. The involved, energetic, and engaging young woman gives way to the mom who only wants the best for her daughter. She is like many parents of children with disabilities—she has embraced not just her daughter but also the changes and challenges that disabilities have brought into her life. She has learned very personally that the world is a place where a great many improvements can be made. And she’s out to make them.
By Geri West, Special Education Consultant and Former SELPA Director for Mendocino County
Some families learn that their child has a disability before the child is even born. Others only discover the disability when the child is well into grade school or even junior high. Regardless of when a disability is determined, it is sometimes difficult for families to know the best person to talk with when challenges arise in the child’s schooling. Sometimes families and school districts don’t agree on how to meet the needs of a student, or they have questions about what constitutes a free and appropriate public education (FAPE) or what is the best and least restrictive environment (LRE) in which the child should be educated.
Whatever the issue, families can be hampered by fear, incomplete or faulty information, and confusion about the resources available. These conditions can contribute to misunderstandings about the most efficient, effective, and respectful “chain of command” they should climb in their efforts to find the right information and successfully resolve whatever is at issue. The list below presents one way for families to think about whom to talk with, and in what order, if they are faced with questions about the educational supports and services their child is receiving.
However, well before their child begins school, families will want to take
advantage of the rich source of information, training, and support that state-
and federally funded parent centers offer (see the insert to this issue). These
organizations and the parents and professionals involved in them can be invaluable—some
parents go so far as to describe them as “life saving”—in helping families
and caregivers know their rights, obligations, and
options in securing the best educational supports and services for their child.
In general, most families find it more helpful and certainly less expensive
and less stressful to build relationships and work out differences with their
child’s teachers and school district staff directly rather than by filing a
due process complaint. Some Family Resource Centers, Family Empowerment Centers,
and Parent Training and Information Centers offer IEP trainings and communication
workshops. As mentioned, some SELPAs provide workshops on ADR techniques, such
as facilitated IEPs and mediation. Learn more about easy, cost-effective strategies
for resolving differences by contacting the CDE PSRS Unit, or by visiting the
following Web sites: www.directionservice.org/cadre/pdf/ParentGuide.pdf
Special Education Mediation: A Guide for Parents, a free document that explains what mediation is and how it works, along with offering practical guidance for ensuring its success
www.directionservice.org/cadre/raisesearch.cfmAn entire database of literature (research-based and policy/practice) related to dispute resolution in special education
www.cde.ca.gov/ls/cs/k3/dispute.asp Information about California’s process for special education dispute resolution
Also, the RiSE Library (see page 14) has numerous lending materials on IEPs
and dispute resolution, such as Making the Transition Team Work, Alternative
Dispute Resolution in a
Nutshell and Beyond Mediation.
* Federal law mandates a system of procedural safeguards that are designed to protect the rights of children with disabilities and their families. The California Department of Education (CDE) lists a summary of these rights at www.cde.ca.gov/sp/se/qapssummary.asp.
The Consortium for Appropriate Dispute Resolution in Special Education (CADRE) is dedicated to helping resolve special education disputes and to reducing the use of expensive adversarial processes. The CADRE Web site offers numerous resources and supports for parents.
Wrights Law provides parents with accurate, up-to-date information about special education law and advocacy. Subscribers can receive, free of charge, the weekly e-newsletter about special education legal and advocacy topics, The Special ED Advocate.
The Disability Rights Education and Defense Fund (DREDF) is a national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. DREDF provides legal advocacy, training, education, and public policy and legislative development.
Disability Rights of California works to advance the rights of all Californians with disabilities through advocacy, as well as by providing free services, training, information, and resources to parents and individuals with disabilities. Information about the organization’s activities is also available in eight languages, in addition to English.
Response to Intervention (RtI): A Primer for Parents, by the National Association of School Psychologists, helps parents understand how RtI provides services and interventions to struggling learners rather than waiting for a child to fail before offering help. It also suggests ways parents can become involved in the process and provides links to additional RtI resources.
General Support and Information for Parents
The Special Child Web site provides educational resources and emotional support to parents and caregivers of children, adolescents, and young adults with disabilities.
DisabilityInfo.gov provides quick and easy access to comprehensive information about disability programs, services, laws, and benefits in the areas of employment, education, housing, transportation, health, benefits, technology, community life, and civil rights.
NICHCY, the National Dissemination Center for Children with Disabilities, offers a wealth of information on disabilities in infants, toddlers, children, and youth; on the Individuals with Disabilities Education Act, No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices.
The Beach Center is dedicated to enhancing the quality of life of families and individuals affected by disability. It is difficult to overstate the range and quality of the materials on this center’s Web site, which provides family-focused supports, guides, and resources.
The California Department of Developmental Services makes available at this URL the California Early Start Central Directory of Early Intervention Resources for Infants and Toddlers with Disabilities and Their Families. More information on supportive services for infants and toddlers with disabilities can be found at www.dds.ca.gov/earlystart; by phoning 800-515-2229; or by
Family Voices is dedicated to helping families make informed decisions, advocate for improved public and private policies, and build partnerships among professionals and families. The site also serves as a resource on health care.
ISER (Internet Special Education Resources) helps parents find local special education professionals for learning disabilities and attention deficit disorder assessment, therapy, and other special needs. The site also offers a directory of state government agencies, teacher training and certification programs, and software and assistive technology.
Surrogate Parent Manual
Federal and state laws mandate that a child who receives special education
services be represented by a parent and that this parent is recognized as an
equal member of the team that develops the child’s Individualized Education
Program (IEP). The California Department
of Education’s Surrogate Parents in California: An Overview—designed for local education agencies (LEAs), Special Education Local Plan Areas (SELPAs), parent and family centers, and volunteers who are willing to serve as surrogates—explains when and how a surrogate parent may be appointed. The manual is available as a free download at the above URL.
The Resources in Special Education (RiSE) Library lends materials to California residents; borrowers pay only return postage. The list below is a small sample of the library’s holdings; go to www.php.com/services/libraries to browse all available resources. To order materials, phone or e-mail RiSE librarian Judy Bower: 408-727-5775, email@example.com.
The Child with Special Needs: Encouraging Intellectual and Emotional Growth
By Stanley I. Greenspan, Serena
Wieder, and Robin Simons. Perseus Books Group: New York, 1998. 512 pages. This comprehensive approach to developmental challenges faced by young children and their families addresses autism, pervasive developmental disorder, language and speech problems, Down’s syndrome, cerebral palsy, attention deficit disorder, and other related disorders. Based on more than 20 years of research into developmental challenges, the book helps parents and professionals maximize opportunities for growth in each child. Call #23125.
Families and Schools: Resolving Disputes Through Mediation
The Consortium for Appropriate Dispute Resolution in Special Education (CADRE). 2002. 15 pages. This publication was developed in response to questions that parents, teachers, administrators, and others have about mediation. Through real-life stories, the book provides a clear picture of the mediation process and its inherent flexibility. Call #23588. (Also a free download at www.directionservice.org/cadre/raisesearch.cfm; scroll down and click on the title).
Family Involvement in Children’s Education: Successful Local Approaches—An Idea Book
Janie E. Funkhouser, Miriam R. Gonzales, and Policy Studies Associates, Inc.,
U.S. Dept. of Education: Washington, DC, 1997. 135 pages. Based on case studies of 20 successful education programs around the country, this book is designed to assist educators, parents, and policymakers as they develop and nurture school-family partnerships at elementary, secondary, and district levels. Call #22066. (Also available as a free download at www.ed.gov/pubs/FamInvolve/index.html.)
Family Resource Centers: Vehicles for Change CA Family Resource Learning Circle. CA Office of Child Abuse Prevention: Sacramento, CA, 2000. 36 pages. This document defines the key characteristics and activities of quality family resource centers, describes how they function as a vehicle for change for families and communities, and helps policymakers and funders “make the case” for the family resource center approach to providing family support services. Call #22918.
Handbook on Family Involvement in Early Childhood Special Education Programs
California Dept. of Education; Sacramento, CA, 1999. 52 pages. This handbook provides information on the development and maintenance of quality programs, the statutory and regulatory requirements involved in their creation and management, and the resources available to local educational agencies to support them. Call #22054. (Also a free download at www.cde.ca.gov/sp/se/fp/documents/ecfaminvl.pdf.)
Strong Families, Strong Schools: Building Community Partnerships for
Richard Riley. U.S. Department of Education: Washington, DC, 1994. 50 pages. This booklet encourages and supports efforts by families to take a more active role in their children’s learning by providing a review of the past 30 years of research evidence that shows the importance of involving families in their children’s learning and by offering examples of family involvement efforts that are working. Call #21928 or 21929.
Around the Clock: Parenting the Delayed ADHD Child
Joan Goodman and Susan Hoban. Guildford Publications: New York, 1994. In this video two families discuss the challenges they face with their preschool sons who are diagnosed with attention deficit hyperactivity disorder (ADHD) and developmental delay and how they have learned to cope and to develop meaningful relationships with their children. Includes manual. 60 minutes. Call #23986.
Every Child Can Learn: Using Learning Tools and Play to Help Children with Developmental Delay
Katrin Stroh, Thelma Robinson, Alan Proctor. Sage Publications, Thousand Oaks, CA, 2008. 232 pages. These resources describe in detail an intervention approach called “functional learning,” based on the play and learning of typically developing children, to support and encourage the development of children with disabilities. Includes book, video CD, and PDF guides. Call #23983.
Parents and Professionals: Partners in Co-Service Coordination
Rosemary Bodolay. Child Development Media: Van Nuys, CA, 2007. These materials present a positive, parent-centered model of service coordination for families with an infant or toddler with special needs. In the video, parents and professionals illustrate the issues involved in effective co-service coordination and the mutual benefits of the described model. The included training guide provides descriptions, definitions, and discussion questions. 20 minutes. Call # 23985.
Improving Student Achievement, Closing The Gap and Increasing Parental Involvement: MISSION POSSIBLE
The Third Annual Title I Parent Training Conference, presented by the California Advisory Council on Education Events (CACEE) and the California Title I Parent Association, is designed for all parents and educators involved in Title I. The conference focuses on parent involvement, beginning reading, character education, dropout prevention, early childhood education, elementary school math, English language learners, middle school math, and racial equality for student achievement. San Diego. For more information, phone 619-822-4382, fax 619-568-3526, e-mail firstname.lastname@example.org, or go to www.caceeconference.com/home.html.
Access, Culture and Climate, Expectations, and Strategies (ACES): A Winning Hand for Student Success
The California Title I State Conference, sponsored by the California Department of Education, will provide a forum for educators to share practices and strategies supported by current research. Anaheim. For more information, contact Lou Ann Harada: phone 916-319-0299 or e-mail email@example.com. Or go to www.cde.ca.gov/sp/sw/t1/title1conf.asp.
BOOST Conference: Best Out of School Time
Sponsored by the Rescue Social Change Group, the BOOST Conference is designed for after-school and out-of-school-time professionals and provides them with an opportunity to network, attend workshops, and learn the most current research in out-of-school time programming. Palm Springs. For more information, phone 619-232-6678; e-mail Steve Hensel at firstname.lastname@example.org; or go to www.boostconference.org.
May 4 –5
Working Toward a Brighter Future
The International Conference on Disabilities—an event for and by persons with disabilities, family members, researchers, and service providers in the various disciplines in the field of disabilities—offers opportunities to learn and to share resources and ideas that support quality of life, community inclusion, and self-determination. Honolulu, HI. For more information, phone 808-956-7539 or 808-256-9364; e-mail email@example.com; or go to www.pacrim.hawaii.edu.
October 15 –17
Closing the Gap: Changing Lives with Assistive Technology
This twenty-seventh annual conference, sponsored by Closing the Gap, Inc., will address a range of technology options as they are being applied to all disabilities and age groups in education, rehabilitation, vocation, and independent living. The event will also offer information on assistive technology practices and strategies by and for teachers, therapists, clinicians, parents, and students. Minneapolis, MN. For more information, phone 507-248-3294, fax 507-248-3810507-248-3294, or go to www.closingthegap.com/conference.
October 15 –18
International Conference on Young Children with Special Needs and Their Families
This twenty-fifth annual conference, sponsored by the Division for Early Childhood (DEC), is an international event for those who work with or on the behalf of young children with disabilities and other special needs. The purpose of the conference is to promote policies and advance evidence-based practices to support the optimal development of young children with special needs. Albuquerque, NM. For more information, phone 406-543-0872,
e-mail firstname.lastname@example.org, or go to www.dec-sped.org.
More and more these days, I’m referred to as a “veteran parent.” We who have navigated the twists and turns of guiding a child with special needs into adulthood often feel justified in believing that we have learned the way. However, just when we think we have the path all figured out, the road changes, the directions appear in a new language, and it feels like we’ve entered a foreign country. This, as veteran parents know, is one of those periods of transition when it seems like we have to start all over again and learn new rules, new faces, and new ways to work with new agencies and programs.
And then, pretty soon, we start thinking we’re veterans again.
As a mom whose son is moving into the adult world, I am once again traveling across unfamiliar terrain, and once again feeling like I am the new kid on the block. Adulthood for an individual with a disability involves working with a multiplicity of agencies and systems, each with its own sphere of responsibility, set of rules, and practical realities. We were not given a road map to guide us when our son was born, and there are no road maps now. As parents, though, when we lace up our boots and move forward, the strategies for surviving—and thriving—are similar, regardless of where we are as parents on this life journey with a child with a disability. Over the past 22 years, I have developed a survival kit that contains some pretty useful tricks and proven tools that are worth sharing. Here’s what they are:
When our son Robby was born, we were one of the lucky sets of parents who had a pediatrician who understood then what we all know now: the value of parent-to-parent support. Before I left the hospital, this doctor had introduced us to another family that had a six-year-old child who was born with Down’s syndrome. Like many other parents before and after, I didn’t know what questions to ask. But I did know that those parents looked happy and sane. From their visit, I gathered the strength to know that, whatever this new baby brought our way, our family would be just fine; or at least I gained the confidence that we would find a way.
Parent-directed Family Resource Centers, Parent Training and Information Centers, and Family Empowerment Centers were all created out of the fundamental belief that there is power in parents supporting and guiding other parents through the emotions, experiences, and decisions involved in raising a child with special needs. Experienced parents, grandparents, siblings, and extended family members have a great deal of valuable insight, understanding, and information to share. Every region in California offers parent-directed centers that provide a multitude of services to ensure that no family with a child with a disability or a developmental delay needs to go without support and information.
As parents, we are most in need of experienced support when our child is approaching what has been identified as a transition—when a child is moving from hospital to home, from Early Start to preschool, from elementary to middle to high school, or from post-secondary school into adult life. As an “old kid on the block” who is becoming the new kid again, I am reminded of how overwhelming the flow of information can be in these times of transition. When our son was first diagnosed, I was intimidated and exhausted by the knowledge I tried to acquire and the stories of the struggles I heard in the first parent group I joined. Ironically, I have spent the last 18 years as a parent-professional providing direct support to families (and probably often overwhelming them with information and new worries).
However, all of my experience in both receiving and giving support has led me to one simple conclusion: Every child and every family is unique. While we share similar feelings, concerns, experiences, and dreams, the path that will help us reach those goals that are most important to our child and family must be our own. As you create a map for your journey, be sure to draw upon all of the sources of support you can find. But never lose sight of the need to filter the information and guidance down to the essential resources that are best suited to you and your family.
One of the biggest lessons for me along this path of parenting a child with a disability came when my son was in his early elementary years. I intensely wanted an inclusive experience for him at school and was attending an IEP meeting. At one point, the principal turned to me and asked, “What is it that you want?” Put on the spot, I was unprepared to give an answer. Even though I had a fairly good idea of what I wanted Robby’s day to look like, I was not ready to summarize all of our goals and dreams for him in a simple statement.
At that meeting I learned that I needed to have a prepared, clear statement of what I wanted for my son, even if I was not always sure how I was going to get it. As a result of this awkward experience, I have made it a point to step back from the avalanche of information and the changing rules and players at every point of transition and look for—and find—some clarity. This has made it possible for me to answer the question of what I want for my child, even in the most stressful moments. Some years the journey was bumpier than others, and the vision more complicated. But it was extremely helpful to always have—and hold onto—a clear idea of where I wanted to go.
When Robby was a baby, he let us know when he was hungry, happy, tired, wet, or angry. He used few words then, and continues to use few words today. But he tells us what he needs just the same. We learned early that when he was communicating something to us, we needed to be paying attention. Thankfully, in more than one life-threatening situation, we were good listeners.
Sometimes it took some research to determine what was making him unhappy or
anxious, enthusiastic or sad, and the research would take many forms: talking
with the members of other families, consulting with professionals, reading
the studies, or just sitting reflectively with him. Often finding a solution
came down to trial and error, because we just weren’t getting the message!
Sometimes there are no direct paths to finding answers—and every once in a
while you just have to forge new ones. As children get older, their ability
to communicate increases—sometimes because their skills improve, but just as
often because we as parents become more skillful in researching and determining
what our child is communicating.
Regardless of our children’s age or ability to communicate, our relationship with them requires that we listen—to behavior as well as words. What is the meaning behind the choices they are making?
As they turn from adolescents into adults, we must pay attention to the wants and needs of our children, even more than we did when they were babies. They may be choosing a different road from the one we have been planning for them. If we want them to be happy as adults, we are often forced to let go of our own plans and help them find and realize their own.
One foggy Tuesday morning I recall asking my older son Shaun to empty the dishwasher. He complained that Robby should do it because he didn’t have a fair share of the chores. I replied that Robby didn’t know how to empty the dishwasher. Shaun responded, “He does too. I make him do it all the time when you’re not here.”
All parents have the experience of feeling that someone—a professional or an educator or even an older brother—is doing their child a disservice by setting unreasonable expectations, whether too low or too high. For Robby, our son with Down’s syndrome, the expectation level was often too low. And for Shaun, who has learning disabilities, the level was frequently too high. This is a very thin line to walk: establishing high expectations, but not demanding the impossible. As in so many other areas of parenting, this one has no road map. However, I know two things to be true: The most important expectations are the ones that the child and the parents place upon themselves; and as I look back on my periods of highest anxiety (usually transition related), they ultimately proved to be periods of the greatest growth for my sons.
Transitioning into new service systems means that the flow of new and confusing information increases, and the choices and decisions start to multiply. But regardless of the degree of stress or anxiety you’re experiencing as a result of your child’s disability, and irrespective of where she is along the path to adulthood, several very concrete, practical strategies will serve you well:
Access information from a variety of sources, including other parents who have been down this road.
Maybe the most important practical advice is to always ask questions. (Remember, there really are no “dumb” ones.) The jargon and acronyms related to disability can be overwhelming if you don’t. If meetings or conversations become overwhelming, it is okay to say, “Please stop. I need a break!” Then take time to think about the discussion at hand, gather more information, and contact others who may help. You will be gaining knowledge and insight by doing this. And, by speaking up and asking when something is not clear, you will also be helping to set a higher standard of clarity for other families.
A friend will periodically remind me that our children with special needs did not come with an operator’s manual. Unfortunately, no child comes with one. Every new family will pioneer a new path built upon older trails carved out by earlier generations. And even though transitions may turn the old kids on the block into new kids, we will all be old kids again very soon. We have developed our survival kits, found good advisors and sources, and maintained a clear sense of our goal. If we have learned how to do one thing well, it is how to continually redraw our map as we better understand what our children want—and where THEY want to go.
California Services for Technical
Assistance and Training (CalSTAT)
A Special Project of the Napa County Office of Education| 5789 State Farm Drive, Rohnert Park, CA 94928
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