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By Leslie Leslie, Project Director, MassPAC/APPLE

Ten years ago, a small non-profit started by Suzanne Gervais, the Massachusetts Association of Parent Advisory Councils (MassPAC), was brought under the umbrella of the Federation for Children with Special Needs. Starting with a database, a mailing list and a series of workshops, the newly christened “MassPAC at the Federation” began the task of creating a statewide network to support volunteer leaders of Special Education Parent Advisory Councils (SEPACs). Project Director Leslie Leslie arrived in early 2011, bringing experience as the founder of her local SEPAC, a background in law and non-profit management, and the understanding of the system as a parent.

MassPAC has grown over the years, evolving to meet the needs of its members. Benefits now include a free Basic Rights workshop as part of the Plus membership, a free registration to the Federation’s Visions of Community Conference, online support through a website, listserve, Facebook group and video informational offerings, as well as email and phone technical assistance.

MassPAC is the go-to place for information on how to start and run a SEPAC. Support from the Massachusetts Department of Elementary and Secondary Education helps MassPAC conduct an annual Advancing Parent/Professional Leadership in Education (APPLE) Institute where parent leaders and special education administrators come together to build an action plan for increased family engagement in their districts. MassPAC participates in statewide advocacy as part of the Coalition for Special Education Funding and the Chapter 222 Coalition addressing school discipline.

Volunteer SEPAC leaders have stepped up, providing mentoring for over 400 SEPAC officers through the Regional SEPAC Leadership Page and PAC-2-PAC Facebook groups. Regional SEPAC leadership groups are creating new opportunities for networking and learning, and SEPACs are partnering to bring more workshop options to their communities. The spirit of collaboration and sharing helps these hard-working volunteers bring innovation and change to their school districts. MassPAC shares best practices and was recently involved in the development of a new national SEPAC guide, “Advocacy in Action.”

MassPAC District/SEPAC members now represent over half of the cities and towns in Massachusetts and our goal is to increase by 10 percent each year over the next five years. MassPAC traveled over 2,100 miles last year; meeting with administrators, educators, SEPACs and community organizations, and conducting workshops to help increase parent knowledge. MassPAC is working with FCSN’s new Statewide Family Engagement Center to create opportunities for families to partner with their schools to increase student outcomes.

The future is bright, but SEPACs still need your support and participation. Plan to attend a meeting of your local SEPAC this fall, connect with other parents, and drive the improvement of school systems to meet the needs of all students. It is challenging but rewarding work, and together we can make a difference.

Pat Cameron

Pat Cameron joined the staff of Federation for Children with Special Needs in January as the Director of Family TIES (Together in Enhancing Support).

Family TIES, funded through the Massachusetts Department of Public Health (DPH), serves as the central directory for early intervention (EI) services across the commonwealth, connecting families who have young children with special needs to EI programs in their area.

Pat oversees six Family TIES regional coordinators who are located in satellite DPH offices across the commonwealth. These coordinators know resources in their regions and can help connect families with children, ages birth to 22 years, to activities and resources.

In addition, she oversees Parent to Parent of Massachusetts (P2P Mass.), a one-on-one parent mentoring program. Through the group, parents can be matched to a parent who has had a similar life experience in order to provide emotional support about a child’s diagnosis, sibling issues, transition questions, and more. P2P Mass. is affiliated with the national Parent to Parent group, P2P USA.

Pat comes to the Federation from the Center of Applied Research Solutions where she provided technical assistance to six states implementing a Project LAUNCH (Linking Actions for Unmet Needs in Children’s Health) grant. Prior to that, Pat worked on several projects at Education Development Center, Inc., (EDC) in Waltham.

She worked at the Center for Early Childhood Professionals in Warwick, R.I., providing technical assistance to administrators of early childhood programs across that state to improve the quality of their programs. In addition, she monitored $6 million in local grants to providers through Race to the Top/Early Childhood Challenge grant.

Prior to that, Pat worked as the early childhood specialist on Safe School/Healthy Students grant program, and a technical assistance specialist on Project LAUNCH.

Pat also worked as the Section 619 coordinator for preschool special education for the Massachusetts Department of Early Education and Care.

“I am delighted to be at the Federation and working collaboratively with the Department of Public Health’s Division for Children and Youth with Special Health Care Needs,” Pat said.

Pat is located at both the Federation’s office in Boston at pcameron@fcsn.org or 617-236-7210 x380 and the DPH office in Boston at patricia.a.cameron@massmail.state.ma.us or 617-624-5563.

The Federation for Children with Special Needs will hold its Latino Parent Leadership Program – Programa de Liderazgo para Padres Lations (PLPL) – for the first time in western Massachusetts.

PLPL helps parents improve their understanding of special education rights so they can better address their child’s needs. The intensive training consisting of 40 hours of classroom instruction and exercises conducted in Spanish.

The program will be held 9 a.m. to 2 p.m., Thursdays, Sept. 26 to Nov. 14, at Holyoke Community College, 330 Homestead Ave., Holyoke. Advance registration is required and class size is limited.

For more information, contact Olga Lopez at olopez@fcsn.org or info@fcsn.org or call 617-399-8330.

Presenters will include attorneys, special education experts, Federation staff, and representatives from the Massachusetts Department of Elementary and Secondary Education (DESE) and the Bureau of Special Education Appeals.

Co-sponsors include the Family Support 360, Enlace de Familias/Holyoke Family Network, Holyoke Community College, Holyoke Public Schools, the Massachusetts Department of Public Health, and Multicultural Community Services of the Pioneer Valley, Inc.

The Pathways for Parents program works with families who receive services from the Department of Children and Families (DCF) and the staff who support them. Eileen Sandberg is Coordinator for the Pathways program at the Federation for Children with Special Needs.

Pathways works with DCF programs including Community Connections, The Fatherhood Initiative, Grandparents Raising Grandchildren Commission, the DCF Family Advisory Committee, and the Family Resource Centers (FRCs). Pathways is also a bridge between these diverse DCF programs and the Federation, providing the Federation with information on the needs at DCF, and letting the DCF programs know about the Federation’s many resources.

The Community Connections Coalitions are networks of local leaders and providers who create awareness around the needs of families in their communities by hosting events, forums, and trainings for parents. The Pathways program participates in statewide meetings of the coalition and serves as a resource on issues related to special education.

The Grandparents Raising Grandchildren Commission seeks to support the increasing number of families headed by grandparents. The Pathways program provides special education information and supports to this program.

The Pathways coordinator also participates in meetings of the Interagency Fatherhood Working Group and is working to develop topics for its conference to provide supports and engage fathers in parenting children with special needs.

The coordinator also is a member of DCF’s Family Advisory Committee (FAC), which advises the DCF commissioner’s office. FAC is a statewide group of community representatives who have experience with DCF, including parents, people who were involved with DCF as a youth, and other community members. The Pathways program supports the FAC and its initiatives in all areas related to special education.

The Family Resource Centers (FRCs) are a big part of the Pathways program’s work. FRCs are a relatively new resource in Massachusetts. They were established following the passage in 2012 of Chapter 240, An Act Relative to Families and Children Engaged in Services (FACES). This legislation replaced the Child In Need of Services (CHINS) statute, under which children who were runaways or had behavioral or truancy problems which could be brought to juvenile court. While the child was entitled to legal representation in these cases, parents were not and, in some cases, children were removed from the custody of their parents. The CHINS system was particularly difficult for families of children with special needs and problems with school refusal related to anxiety, because no distinction was made under the law for special needs children.

The FACES legislation sought to change the system from punishment to support, with additional resources for families. Under the new law, FRCs began to open across Massachusetts as a network of community-based providers who offer parenting programs, early childhood services, support groups for parents and grandparents, and information and referrals to families.

There are now 22 FRCs in Massachusetts – soon to be 24 – supporting families with and without DCF involvement. Each FRC has a school liaison who works with families with trauma, discipline, and special education issues.

However, one limitation of the FRCs is that the school liaisons are not educational advocates and do not attend Individualized Education Program (IEP) meetings for the FRC families. Therefore, it is important to support parents with trainings about their child’s rights in special education and how to work effectively with schools.

Pathways supports the FRC staff and families by providing trainings, workshops, and answers to parents’ questions in order to help families learn to advocate for their children and to help other community members.

For more information about the Pathways program, contact Eileen Sandberg at esandberg@fcsn.org.

Planning a Life Transition Conference: Meeting Families’ Needs

By Nancy Mader, Director of Transition Projects; Pat Nemia, Director of Massachusetts Family Voices,
and Katie Dahlerbruch, Massachusetts Family Voices Intern

The Planning a Life (PAL) two-day transition conference has served hundreds of parents, family members, and professionals throughout Massachusetts over the years.

The conference has provided a baseline of knowledge around the Individuals with Disabilities Education Act (IDEA), transition assessment, adult service agencies, and community resources. Also, it has furnished opportunities for parents and professionals to learn together about how they can better serve their students.

PAL has provided an umbrella of information that has met the needs of many families, but not all. For this reason, we are creating more specific PAL conferences based on feedback from families and to better meet the needs of more families.

Last spring we piloted Planning a Life: Preparing for College, a one-day transition conference for families of students on Individualized Education Plans (IEPs) who will graduate with a high school diploma with the vision of attending college.

The PAL conference covered disability disclosure and self-determination, Section 504 and American with Disabilities Act (ADA) accommodations, and hosted guest speakers from the disability services office of a local community college and community agencies that support college students. The day was a great success and made it clear that we need to expand our conference to reach more families.

This fall, the LINK Center is teaming up with Massachusetts Family Voices, both projects of the Federation, to create a PAL conference for families of students with medical complexity on IEPs.

Through our conversations with parents, we learned that our PAL conference did not account for the additional challenges that these families may face in transition planning and determining post-school outcomes for their children.

At this conference, we plan to cover the basics of transition planning included in the PAL conference and elaborate on the potential post-school outcomes for students with medical complexity, with the intent to better guide the transition planning process. In addition, presenters will address transition from pediatric to adult healthcare services, guardianship and alternatives for decision-making, and healthcare financing.

We aim to help families effectively communicate with the IEP team and better advocate for the goals and benchmarks necessary for the successful transition of their children with complex medical needs.

We are so excited about these new PAL conferences and can’t wait to meet new families from across the state. Please keep an eye on our website and social media for date and location announcements.

What’s New at the Parent Training and Information Center (PTIC)

Late Afternoon Extended Call Center Hours

The Call Center is a free service for parents and professionals with questions related to special education. It is staffed by trained volunteers and information specialists knowledgeable about federal and state special education laws and procedures as well as community resources.

The vast majority of our staff and volunteers are parents of children with disabilities and thus have personal experience navigating special education.

The Call Center is typically available from 10 a.m. to 3 p.m., Mondays through Fridays. However, due to the generosity of the Cummings Foundation, we are now offering additional Thursday hours from 3 to 8 p.m.

We hope to be available to parents and professionals who could not access the Call Center during our typical hours.

To request a Thursday call back, please fill out our intake form here: https://fcsn.org/ptic/call-center/call-center-intake-form/ and indicate your time preference. We will contact you on Thursday afternoon from 3 to 8 p.m. to answer your questions about special education.

Hours Change for Parent Consultant Training Institute

The Parent Consultant Training Institute (PCTI) is an intensive training program designed to provide parents and professionals with a solid foundation in special education laws, procedures, and related subjects. It is annually attended by about 100 parents and 50 professionals.

Based on a Parent Needs Assessment conducted in the fall of 2019, the PTIC has adjusted PCTI hours. Instead of running from 9:30 a.m. to 4 p.m., the PCTI will run shorter hours one day per week for eight consecutive weeks.

To supplement training time, participants will complete approximately 1.5 hours per week of additional coursework online. This coursework will include videos, discussion boards, blogs, and other media that support and complement the course material.
Registration is open for the PCTI beginning on September 18 to be held from 9:30 a.m. to 2:30 p.m. on eight consecutive Wednesdays at the Brockton Area Arc, 1250 West Chestnut St., Brockton, MA 02301.

Haitian Outreach Coordinator

Shey Jaboin

Grants from the Massachusetts Developmental Disability Council and the Cummings Foundation have allowed the PTIC to hire Shey Jaboin as our part-time Haitian Outreach Coordinator.
Shey has advanced our collaboration with the Haitian-American Public Health Initiative (HAPHI), expanded outreach to other Haitian organizations, and increased our offerings to the community.

This past school year, Shey helped us present several Basic Rights and IEP workshops and an IEP clinic at HAPHI, the Brockton Area Arc and the Philadelphia Church in Malden.

With HAPHI, Shey identified experts to provide a series of workshops for 25 Haitian parents who attended our Visions of Community (VOC) conference in March. She also identified two Haitian youth to attend the VOC Becoming a Leader Youth Forum.

The PTIC revised and translated into Haitian Creole its Turning Three Essentials workshop and our outreach flyer. Shey is currently conducting extensive outreach to early intervention programs potentially serving the Haitian community to offer the workshop.

Dear Federation family,

Twenty-five years ago, a pre-school teacher called a mother to recommend that her daughter, who was about to enter kindergarten, get evaluated because of lagging motor skills. The mom was very confused but agreed to an assessment by the school district’s pediatrician. The experts came back and told the mom that her daughter exhibited abnormally low muscle tone and recommended a number of accommodations.

The mom then entered the complexities of Individualized Education Program (IEP) meetings. She had little idea of what to expect and was still a little baffled by the issues identified by the pediatrician and teachers. At the first meeting, they recommended many adaptations, some in the classroom and some that would require her daughter to be taken out of the classroom.

The IEP meetings continued through elementary school. Every year there was a new meeting with a different cast of characters, more occupational and speech therapy, and different accommodations. Despite the support of a very open and welcoming school district, the mom left these meetings confused and unsure of what was best for her child. Her daughter hated the process since she felt they made her different from the other kids. However, the mom was insistent that her daughter stick with the plan. Even after her daughter moved on to junior high school, the mom still had doubts of whether she had done the right thing.

This mom is me. The girl is my younger daughter, Abby.

I did not know about the Federation at that time. But I certainly had the thirst for information and desire to do the best for my child that draws over 100,000 families each year to the Federation.

Now, I am so proud to join this vibrant and impactful organization.

Over the coming year, I look forward to working with the Federation’s staff to build our foundational programs to reach more families, particularly those underserved by the education system.

We will:
• Strive to develop best practices for family engagement.
• Mentor parents of children with special health needs.
• Recruit and train surrogate education parents for some of the most vulnerable youth in Massachusetts.
• Develop new trainings on social-emotional learning.
• Provide innovative transition programs.
• And, expand our call center to reach more parents.

The common thread through all this is supporting families to improve education, physical health, and mental health outcomes for their children.

A final note on Abby: We were told that Abby’s abnormally low muscle tone would affect her learning, her relations with peers, and her speech and general fitness. While at times the process was difficult, I greatly benefited from a dedicated school and health-care team. I benefited from my daughter, too.

Despite being warned that she would struggle throughout her life with physical endurance, after she graduated college, Abby went on to hike the entire 2,200 miles of the Appalachian Trail. She is now married (to her boyfriend who hiked with her) and continues to work in the outdoor recreational industry, leading trips and providing educational programs for teens. She is working toward her master’s degree in education.

As you can see, I am deeply and personally committed to the success of the Federation and the children and families it serves.

With gratitude,

Planning a Life: Making the Most out of High School

Multicultural College Students outside on campus

Middle school and high school is the time when students with disabilities and their families need to start thinking and planning for their future.  Families must be active in the planning process to help a student with their post-secondary vision and to prepare for a full and productive life after high school.  This transition process can be overwhelming, so connecting students and families to resources and services early on is one of the goals of the Planning a Life Conference.

Planning a Life is a two day Transition planning conference with information and resources for families, educators and professionals.  Topics include:

Transition planning is an ongoing process that starts when a student on an IEP turns 14 and continues throughout their high school and young adult years. Our goal is to build a statewide network of proactive and informed families, educators and professionals working in partnership to develop student focused transition plans.

Planning A Life is scheduled from 8:30am – 4:00pm on a Friday and Saturday three times a year throughout Massachusetts. Conference dates and site locations for the current 2015 – 2016 school year are listed below. Registration is required as space is limited. There is a program fee for this conference, limited scholarships are available.

Planning A Life  2015-2016 dates and locations:

Friday and Saturday, November 4th & 5th, 2016:
Seven Hills Foundation
208 Charlton Road, Sturbridge, MA 01566

Friday and Saturday, February 3rd & 10th, 2017
Federation for Children with Special Needs
The Schrafft Center
529 Main Street, Suite 1M3
Boston, MA 02129

Friday and Saturday, April 7th & 8th, 2017 

Registration fees for this conference are $125 per person or $175 per family or professional.  FCSN’s Planning A Life conference is open to families of students with disabilities, educators and other professionals.

For more information contact The LINK Center at 617- 236-7210 or email to: info@fcsn.org