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“Change happens—Make it Count!” Issue 113 – Winter 2017

(877) 35-EI-PLP www.eiplp.org eiplp@live.com

iContiene articulos en Español!

The Parent Leadership Project’s

Parent Perspective

Changing Perspectives By Jada Carlson, M.Ed. & Mom

I entered the world of Early Intervention as a professional in 1996 shortly

after graduating from college. I was initially hired as a developmental edu-cator; a role that grew to become so much more. I learned about child de-

velopment from speech, physical and occupational therapists. I developed relationships with so many special families over the years.

Over the years, as I grew professionally, my personal life expanded and

changed. I married my husband in May of 2000 and was blessed to begin a family in 2004. I gave birth to twin boys at 35 weeks gestation (the most

important accomplishment of my life!).

From the beginning, both of my sons had medical and developmental issues and we found ourselves on the receiving end of Early Intervention services. This was very challenging for me because I

felt like I should be able to “fix” issues that were out of my control. It was very different to be the family receiving ser-

vices.

We weathered the storm of speech delays, low muscle tone, feeding issues and sensory processing disorder. Every

week, we had two to three home visiting staff in our home to work with one or the other of my boys. They provided the

developmental support they needed. There were days when I was so overwhelmed I could just cry. My Early Interven-tion providers were always there to support me. I “really” knew what it felt like to be a parent of children in Early Inter-

vention and it was not easy.

When our boys turned three years old, they began to receive services from our local school system. It was very different from the family friendly EI Program we had grown to love. We rallied through the ups and downs of Individualized Edu-

cation Plan (IEP) services and testing through fifth grade. At that point, one of my sons no longer required special edu-cation services, and the other one had his services significantly reduced due to the progress he had made.

My boys are now in seventh grade. Only one of them continues to receive minimal support from special education. They

are both active in sports, have lots of friends, and have grown to be two young men that my husband and I are very

proud of.

Jada Carlson is an Early Education and Care Instruc-

tor at Methuen High School. She previously worked

as an Early Intervention Specialist at the Profession-

al Center for Child Development, Andover/Lawrence

and with the Massachusetts Early Intervention Par-

ent Leadership Project.

Remember March is NCSEAM Family Survey Month! Please ask your Service Coordinator if you are due to complete one. Your feedback makes the Massachusetts EI System better!

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Thank you for completing a NCSEAM Family Survey last year. In 2016, 4750 Surveys were returned which means that

more families than ever completed theirs. Our return rate of

38.5% shows a continued increase in the number we get back. This could be due to the revised family flyer and the

added choices for returning completed Surveys. Whatever the reasons, we appreciate your help in gathering this important

information.

Information gathered through the Family Survey helps tells us how effective Early Intervention

services are for families. Your feedback is very important. It is used to report on Family Out-

comes with the goal of continuously improving

our Massachusetts Early Intervention system.

In 2016 we learned that: 86% feel that Early Intervention services

helps your family know your rights

83.1% say that Early Intervention services

helps your family effectively communicate your children’s needs

92.3% feel that Early Intervention services helps your

family help your children develop and learn

Our next NCSEAM Family Survey distribution will be in March.

Families whose children have been enrolled in Early Interven-tion for at least six months, and who did not fill out a Survey

in October 2016, will receive one from their Service Coordina-tors. Remember families complete only one Survey each cal-

endar year. Please be on the lookout for yours and take a few

minutes to complete it in pencil. Then simply return it in the self-addressed, stamped envelope provided. You may either

drop it in the mail or seal and initial the envelope and hand it to your Service Coordinator.

Please continue to share your thoughts and feelings about the

impact of Early Intervention services for your children and family with your own EI program and with the Department of

Public Health.

Family Survey Frequently Asked Questions

1. How many Hispanic families completed the Survey?

In 2016, 855 families who identified themselves as Hispanic/Latino completed and returned the Family Survey. This represents 18% of Surveys returned.

2. Is DPH really using the information that is collected on the Family Survey?

DPH reports the percentages from returned Family Surveys – (listed above) to the Office of Special Edu-cation Programs in our Annual Performance Report. In addition, the Department looks for trends and emerg-ing issues that families indicate on their Surveys. We work with EI Programs to improve practices and make changes as needed.

Gracias por completar la Encuesta Familiar NCSEAM el año pasado. En el 2016, recibimos 4750 encuestas, lo que signi-

fica que hubo récord de familias que las completaron. La

tasa de retorno de las encuestas del 38.5 % muestra un au-mento constante de la cantidad de encuestas recibidas. Esto

puede deberse al folleto familiar revisado y a las opciones que añadimos para devolver las encuestas completas. Sean

cuales sean las razones, agradecemos su colaboración para poder recopilar esta importante información.

La información que recopilamos a través de la

Encuesta Familiar nos dice cuán eficaces son los servicios de Early Intervention para las

familias. Sus comentarios son muy importan-

tes. Usamos las encuestas para ampliar la in-formación sobre los resultados de las familias

con el objetivo de mejorar constantemente nuestro sistema de Early Intervention en Mas-

sachusetts.

En el 2016 aprendimos lo siguiente: El 86 % siente que los servicios de Early Intervention

ayudan a sus familias a conocer sus derechos. El 83.1 % dice que los servicios de Early Intervention

ayudan a sus familias a comunicar eficazmente las nece-

sidades de sus hijos. El 92.3 % siente que los servicios de Early Intervention

ayudan a sus familias a asistir a sus hijos para que se desarrollen y aprendan.

Nuestra próxima Encuesta Familiar NCSEAM se realizará en

marzo. Aquellas familias que tengan hijos inscriptos en Early Intervention con al menos seis meses de antigüedad, y que

no hayan realizado nuestra encuesta de octubre de 2016, recibirán una encuesta de sus coordinadores de servicio. Re-

cuerde que las familias pueden completar una encuesta por año calendario. Esté atento a recibir la suya y tómese unos

minutos para completarla con lápiz. Luego, simplemente

devuélvala en el sobre con estampilla y dirección que recibió. Puede enviarla por correo o cerrar el sobre y colocarle su

nombre y entregárselo a su coordinador de servicios.

Siga compartiendo sus opiniones y sentimientos sobre el im-pacto que los servicios de Early Intervention generan en sus

hijos y familia con su propio Programa de EI y con el Depar-tamento de Salud Pública.

Preguntas frecuentes sobre la Encuesta Familiar

1. ¿Cuántas familias hispanas completaron la encuesta?

En 2016, 855 familias que se autoidentificaron como hispanas o latinas completaron y devolvieron la En-cuesta Familiar. Esto representa el 18 % de las en-cuestas recibidas. Continuado p. 3

NCSEAM Family Survey Update

Información sobre la encuesta familiar de NCSEAM

The Parent Leadership Project’s

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Parent Perspective

I Now Prefer the Word “Opportunity” By Mary Castro Summers, former Director, Family TIES of Massachusetts

Ahora prefiero la palabra “oportunidad” Por Mary Castro Summers, ex directora, Family TIES de Massachusetts

Unexpected news, transitions, uncertainty were words often found in my vocabulary

many years ago. Thinking back to our family’s introduction to the world of special needs, I remember with trepidation my overwhelming fears: how will my son’s seri-

ous health concerns impact his life and that of our family; how could I possibly learn all I’d need to support his complex needs; and what would the future hold?

Has your family faced similar questions, too?

Like so many parents, I once suffered from the “60 in 60”mindset. Just 60 seconds

after Matthew’s complicated birth, I needed to know if he would survive and what would the future hold. In 60 days, I naively wished to leave behind his talented medical team and durable medical

equipment so he could enjoy a life more like his two older brothers. In 60 months, I just wanted to see him leave behind specialized in-home schooling, to fit in with kindergarten friends and flourish in his first days at school.

Then as my son turned 6, I began to recognize the incredible pressures I had put upon myself, feeling that I needed to

do everything right to literally keep him breathing and magically increase his opportunities for a full life. As he entered first grade, I acknowledged confidence in my parenting skills and, much more important, the commitment of his medical

and school teams. Special communities of friends, also families whose children had a wide range of special needs, fos-

tered a deep appreciation of how far he had come, the incredible resources that supported our son and family, and the gifts of peer support that meant the world to all of us. Not only were we surrounded by goodness, but we felt the added

blessing of emotional support. When days went well, we had energy to offer to others. For harder times, we assisted wonderful friends and offered words of encouragement. With an appreciation of where we’d been, life became more

precious.

Many years have passed. We’ve weathered new diagnoses, treatments, and routines. The good news is that with our mature mindset, we have been able to see each “curve ball” as a new opportunity to learn, develop skills, meet new

dedicated healthcare professionals, and support individuals also traveling a precarious medical journey. Time has a mag-

nificent way of offering perspective, as anxiety wanes and continued successes bring new confidence to see what is next for our son and family.

My voice of experience encourages parents to stop and take a deep breath when you cannot think straight. Reach out

for emotional support, to decrease worries and increase knowledge and energy as you address challenges. Most im-portantly, remember you are not alone. The staff of Family TIES of Massachusetts is available to listen to your concerns,

offer emotional support, and assist in finding ways to bring joy to your family. We are all in this together, parents help-ing parents. Call 800-905-TIES (8437) when you just need to breathe. Pass it on.

Muchos años atrás, palabras y frases como "noticias inesperadas", "transiciones",

"incertidumbre" eran frecuentes en mi vocabulario. Al pensar en el ingreso de mi familia en el mundo de las necesidades especiales, recuerdo los miedos que me

abrumaban: “¿De qué manera los serios problemas de salud de mi hijo afectarán su vida y la de nuestra familia?”. “¿Cómo haré para aprender todo lo que necesito

para apoyar sus complejas necesidades?”. “¿Qué nos deparará el futuro?”.

¿Su familia ha enfrentado dudas similares?

Como muchos otros padres, yo también sufrí la mentalidad de “60 en 60”. Solo 60 segundos después del nacimiento complicado de Matthew, necesitaba saber si él

iba a sobrevivir y qué depararía el futuro. A los 60 días deseé ingenuamente po-der dejar en el pasado al talentoso personal médico y a los aparatos médicos du-

rables para que mi bebé pudiera disfrutar de la vida como sus otros dos herma-

nos. A los 60 meses deseé que él pudiera dejar de recibir educación especializada en el hogar para pasar a relacionarse con sus amigos del jardín infantil y desen-

volverse bien en sus primeros días de escuela. Continuado p. 4

2. ¿El Departamento de Salud Pública usa la información que se

recopila de la Encuesta Familiar?

EL Departamento de Salud Pú-blica le informa los porcentajes de las Encuestas Familiares reci-bidas (mencionadas anterior-mente) a la Oficina de Progra-mas de Educación Especial en nuestro Informe Anual de Desempeño. Además, el Depar-tamento busca tendencias y problemas emergentes que las familias indican en sus encues-tas. Trabajamos con los progra-mas de EI para mejorar nues-tras prácticas y hacer los cam-bios necesarios.

Información sobre la encuesta familiar de

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Cambio de perspectivas Por Jada Carlson, M.Ed.

The Parent Leadership Project’s

Ingresé al mundo de la

intervención temprana como profesional en 1996,

poco después de haberme graduado de la universi-

dad. Inicialmente me con-

trataron como educadora del desarrollo - un puesto

que se convirtió en algo mucho más grande.

Aprendí sobre el desarrollo infantil a través de terapistas físicos, ocupacionales y del habla. Entablé relación con muchas familias

especiales a lo largo de los años.

Con el pasar del tiempo, a medida que crecía como profesional, mi vida personal se expandió y cambió. Me casé con quien ahora es

mi esposo en mayo del 2000 y fui bendecida con la llegada de mis

hijos en el 2004. Di a luz a gemelos varones a las 35 semanas de gestación (¡el logro más importante de mi vida!).

Desde el comienzo, mis dos hijos tuvieron problemas médicos y de

desarrollo, y pasamos a estar del lado de recibiro servicios de in-tervención temprana. Esto fue un gran desafío para mí porque

sentía que tenía que poder "arreglar" los problemas que estaban fuera de mi control. Fue algo muy diferente ser la familia que reci-

be los servicios.

Atravesamos desafíos tales como retraso del habla, tono muscular

bajo, problemas de alimentación y trastorno del procesamiento sensorial. Cada semana, dos o tres miembros del personal de visi-

tas a domicilio venían a mi casa para trabajar con alguno de mis dos hijos. Ellos les brindaron el apoyo que necesitaban para su

desarrollo. Había días en que me sentía tan sobrepasada que co-menzaba a llorar. Mis proveedores de Early Intervention

(Intervención Temprana) siempre estuvieron para contenerme.

Conocí lo que de verdad significa que un hijo necesite intervención temprana y no fue fácil.

Cuando nuestros hijos cumplieron tres años, comenzaron a recibir

servicios de nuestro sistema educativo local. Era muy diferente al Programa de Early Intervention familiar con el que nos habíamos

encariñado. Atravesamos los altibajos del Plan de Educación Indi-vidualizada (IEP) y los exámenes hasta el quinto grado. Para ese

entonces, uno de mis hijos ya no necesitaba los servicios de edu-

cación especial, y el otro había logrado tantos avances que sus servicios fueron reducidos.

Mis hijos ahora se encuentran en séptimo grado. Solo uno de ellos

continúa recibiendo apoyo mínimo de educación especial. Ambos hacen deportes, tienen muchos amigos y se han convertido en jó-

venes de los que yo y mi esposo estamos muy orgullosos.

Jada Carlson es una instructora de educación temprana y cuidados en Methuen High School. Anteriormente trabajó como especialista en intervención temprana para el Centro Profesional de Desarrollo Infantil Andover/Lawrence, y con el proyecto de Liderazgo de los Padres en Intervención Temprana de Massachusetts.

Luego, cuando mi

hijo cumplió 6 años, comencé a recono-

cer las terribles pre-siones que había

puesto sobre mí

misma cuando sen-tía que debía hacer

todo bien para, lite-ralmente, mantenerlo con vida y mejorar mágicamente

sus oportunidades de tener una vida plena. Cuando ingresó a primer grado, tomé confianza en mis aptitu-

des como madre y, mucho más importante, en el com-

promiso de sus equipos médicos y escolares. Comuni-dades especiales de amigos, además de familias cuyos

niños tuvieron diferentes necesidades especiales, ex-presaron un profundo reconocimiento por el gran

avance que él había conseguido, por los recursos in-

creíbles que apoyaron a nuestro hijo y a nuestra fami-lia, y por el obsequio que fue la contención de nuestros

pares, que tanto significaron para nosotros. No sola-mente estuvimos rodeados de generosidad, sino que

también sentimos la bendición adicional de contar con contención emocional. Cuando las cosas marchaban

bien, teníamos energía para ofrecerles a los demás. En

momentos más difíciles, brindamos ayuda a nuestros maravillosos amigos y les ofrecimos palabras de alien-

to. Al apreciar el camino recorrido, la vida se volvió más valiosa.

Ya han pasado muchos años. Hemos superado nuevos

diagnósticos, tratamientos y rutinas. La buena noticia es que al tener una mentalidad madura, hemos podido

ver cada dificultad como una nueva oportunidad para

aprender, desarrollar aptitudes, conocer nuevos profe-sionales especializados de la salud, y apoyar a perso-

nas que están atravesando dificultades médicas. El tiempo tiene una magnífica forma de ofrecer perspecti-

va cuando la ansiedad disminuye y los logros constan-

tes renuevan la confianza hacia lo que le deparará el futuro a nuestro hijo y a nuestra familia.

La voz de mi experiencia alienta a los padres a dete-

nerse y a respirar profundo cuando no pueden pensar con claridad. Busquen contención emocional para que

las preocupaciones disminuyan, y para que el conoci-miento y la energía aumenten a medida que enfrentan

sus desafíos. Y lo más importante: recuerden que no están solos. El personal de Family TIES de Massachu-setts se encuentra disponible para escuchar sus inquie-

tudes, ofrecerles contención emocional y ayudarlos a encontrar la manera de llevar gozo a sus familias. Esta-

mos todos juntos en esto: somos padres que ayudan a otros padres. Llamen al 800-905-TIES (8437) cuando

necesiten un respiro. Hagan correr la voz.

Ahora prefiero la palabra “oportunidad” Continuado

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Parent Perspective

On Monday, May 8 and Tuesday, May 9th, the Massachusetts

Early Intervention Consortium will host its 38th MEIC Confer-ence at the Sheraton Framingham Hotel & Conference Center

in Framingham, Massachusetts. This is an opportunity for par-ents/caregivers and providers to come together to learn. It

provides an excellent chance to network with other families

and make impactful connections.

Laura van Dernoot Lipsky, MSW, founder

and author of Trauma Stewardship: An

Everyday Guide to Caring for Self While Caring for Others, will kick off the confer-

ence with her Keynote Address, Trans-forming Trauma—How to Sustain Our-

selves. She will share concrete skills for sustaining ourselves, and recognizing as

well as reconciling, its toll on us individual-

ly and collectively.

Workshops at this year’s conference include “Let’s Go For a Walk,” “Learn to Play and Play to Learn: Teaching Language

and Social Skills,” “Telling Your Story: a Workshop for Fa-thers,” “Farm to Table: A Comprehensive Group Model of Nu-

trition and Feeding,” “Change Your Relationship with Stress: Making Calm Your New Normal” and many more. To view the

brochure and learn more, visit web.percs.info.

Are you a Parent Contact for your EI Program? Please reach

out to Liz Cox at liz.cox@state.ma.us or 877-353-4757 about how you can attend the conference this year!

Federation for Children with Special Needs

www.fcsn.org

Turning Three—Provides information about the required process for transitioning a child from Early Intervention (EI) to

special education. Discussion includes EI transition planning, special education eligibility, the Team process and the parent’s

role in planning, making decisions and monitoring their child’s

progress.

Basic Rights—Provides families with the foundation

knowledge needed to understand other special education

workshop topics. This workshop introduces participants to the federal and state special education laws, special educa-

tion process, parent and student rights and how to resolve differences with the school.

An IEP for My Child— Explains the Individual Education

Program (IEP) document, its development, how to articu-late a vision, write measureable annual goals, monitor a

child’ progress and understand how the document will sup-port a student.

Massachusetts Early Intervention Consortium (MEIC) 38th Annual Conference Monday, May 7 & Tuesday, May 8, 2017 Sheraton Framingham Hotel & Conference Center Framingham, MA

Data—Making it Measurable

The term “data” for

some people can be scary, for others

overwhelming, and for still others, excit-

ing. In the simplest

of terms, data is information collected that helps us measure how things are going. Data should guide deci-

sion making. An example of data collection is the NCSEAM Family Survey that is distributed in March and

October. The information that caregivers share on their Family Survey helps the MA Department of Public Health

(DPH) know how Early Intervention (EI) Programs are

meeting their needs. It also tells the Office of Special Education Programs (OSEP) how we are doing as a state

in early intervention.

Another example of data that the Early Intervention Par-ent Leadership Project (EIPLP) collects is how many

emails and phone calls we receive, how many FaceBook and Twitter interactions we have had and more broadly,

how many people visit our EIPLP website

(www.eiplp.org). In the fiscal year, 2015—2016, the EIPLP published 3 printed Parent Perspective newsletters

and 2 Parent E-Perspective newsletters; we had 501 EIPLP FaceBook page “likes,” we had 117 Followers on

Twitter and 421,423 total hits to our website. These

numbers, when we pull them together, helps us better understand how you, our reader, likes to get information

from us.

Some research that is gathered, guides evidence-based practice. Evidence-based practice combines clinical ex-

pertise (physical, occupational, speech, etc.), patient values and the best research, to inform patient care.

(Sackett, 2002) An example of data gathering is when an

assessment is done on your child. The information that is gathered helps you and your child’s service provider,

determine with what skills your child may need support. Providers may use the Battelle Developmental Inventory

or another tool to help identify areas of need. In addi-tion, EI Programs are (or soon will be) adopting a Parent

Interacting with Infants (PIWI) model for providing

homecare to their families. This model supports parents in carrying over strategies in everyday routines, high-

lighting repetition as key in infant and toddlers’ learning.

Much of our everyday lives are impacted by data. Under-standing and embracing the benefits of measuring infor-

mation can make a big difference in helping to advocate for your children, learn about programs and services,

develop strategies and so much more.

Sackett, D. D. (2002). Introduction to Evidence-Based Practice. Retrieved February 15, 2017, from Duke Uni-versity Medical Center, guides.mclibrary.duke.edu/c.php?g=158201&p=1036021

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Receive our Newsletters, Events & Opportunities more quickly!

Email us at eiplp@live.com and ask to be added to our email list!

The Parent Leadership Project’s

Family Opportunity—A Chance to Inform the Department of Public Health

Watch the Early Intervention Training Center calendar for

up-to-date opportunities...providers, families and caregiv-ers are all welcome to participate in the online courses

available! www.eitrainingcenter.org

The Department of Public Health (DPH) would like to invite

parents interested in taking the next step in developing their leadership skills to join a review team. .

Early Intervention services are paid for, in part, with funds

from Part C of the Individuals with Disabilities Education Act –“Part C of IDEA”. The Office of Special Education Pro-

grams (“OSEP”) at the federal Department of Education (DOE) oversees each state’s Early Intervention system.

OSEP requires that each state have policies that meet Part

C of the IDEA.

OSEP is requiring that the Department of Public Health re-

view the policies for parents when there is a concern or

disagreement with their child’s EI program. These are known as the options for dispute resolution. The EI dis-

pute resolution system includes the options parents have to file a complaint, request a mediation and/or due process

hearing.

DPH would like to have parents as part of the team that will review our state’s policies to make sure they measure

up to the federal requirements. You do not need any previ-

ous experience with policy writing. We encourage parents who may or may not have had positive experiences in EI to

participate. A DPH staff person will support the review team through this process. We are able to provide a sti-

pend to cover time spent taking part in review team meet-

ings and travel to the Schrafft Center. Unfortunately, child-

care is not available.

Want to learn more?

Please take a few minutes to review the documents. DPH staff will explain each section and provide support to par-

ents new to this process. Monthly meetings will be held at

the Federation for Children with Special Needs, 529 Main Street, (the Schrafft Center) Boston (Charlestown) from

10am to approximately 12:30pm. The Schrafft Center is accessible by public transportation. Parking is free with ad-

vance notice.

The OSEP self-assessment grid is attached (Part C Self-Assessment: Dispute Resolution) or may be found

here: osep.grads360.org/#communities/pdc/documents/9789

Section XIII Procedural Safeguards of the Early Interven-

tion Operational Standards are attached. Find full Early In-

tervention Operational Standards at www.mass.gov/eohhs/docs/dph/com-health/early-childhood/ei-operational-

standards.pdf

Please feel free to contact Mary Dennehy-Colorusso for additional information about the webinar, process or with

any questions. If you are deaf or hard of hearing, or are a person with a disability who requires accommodations,

please contact Mary Dennehy-Colorusso at Mary.dennehy-

Colorusso@state.ma.us or 978-851-7261 ext. 4016.

Perkins: New England Early Connections Conference

April 29, 2017—8am to 3pm Learn more:

www.perkins.org/get-involved/events/early-connections

HELP us meet our goal of “750 likes!”

Massachusetts Early Intervention (EI) System

Mission Statement:

Massachusetts Early Intervention is a viable system that builds upon supports and resources for family members and caregivers to enhance the development and learning of infants and toddlers through individualized, develop-mentally appropriate intervention embedded in everyday activities.

Core Values: Respect ~ Individualization ~ Family Centeredness ~

Community ~ Team Collaboration ~ Life Long Learning

7

I would like to introduce myself as the new Director of

Family TIES of Massachusetts. I am the mother of two grown sons. My oldest son has Attention Deficit Hyperac-

tive Disorder (ADHD) and struggled with a language based learning disability during his school years. He had the ben-

efit of a great education that provided him with the ac-

commodations and supports he needed to succeed. He’s a U Lowell grad and today, he is a realtor with a thriving

business!

My younger son was born with Down syndrome and a ma-jor heart defect. He had open heart surgery at 4 months

old. From an early age through his adolescence, he had many ear infections and ear operations. Like his brother,

he was also diagnosed with ADHD. Today, he lives with several housemates in a great home that is not too far

from where I live. He has a job and attends a community

based day services program. Most important, he is healthy and happy!

From the day I was told that my son had Down syndrome,

and everyday thereafter, I have been an advocate and volunteer. My first task was to develop a newsletter for

the parent support group at my son’s Early Intervention program. When he transitioned to preschool, I became

active in the Parent Advisory Council (PAC). I held a num-

ber of positions for the PAC over the years. I am proud of the work we accomplished. We collaborated with our

school district and town to create new inclusive programs; we held them to the high standards allowed by the law. In

the process, we formed solid relationships built on mutual

respect.

As the years passed, I strengthened my advocacy and

leadership skills. I completed the LEND Fellowship

(Leadership Education in Neurodevelopmental Disabilities), Mass. Families Organizing for Change Leadership Training

series, the Federation’s Parent Consultant Training and became active in MDSC’s Legislative Task Force and the

Central Middlesex Citizens’ Advisory Board of the Depart-

ment of Developmental Disabilities. In my professional life, I worked as a Parent Advisor to Children with Special

Needs at a health plan and later as a Health Educator.

I am thankful my family and I live in Massachusetts. There are many excellent schools, hospitals, supportive pro-

grams and an abundance of resources that don’t exist in every state. However, I know firsthand that it can be over-

whelming and difficult to navigate the systems of care for

children & youth with special health care needs. The Fami-ly TIES Regional Coordinators and Parent-to-Parent Coor-

dinator are experts in this area and we want to help fami-lies face the challenge! Spread the word or give us a call

on our toll free line, 800-905-TIES (8437). We look for-ward to working with you.

DPH Spotlight

Massachusetts Technology Assistance

Resource Team (MASSTART)

Transitioning children with special health care needs to

school can be difficult especially it they are assisted by

medical technology. The Massachusetts Technology Assis-tance Resource Team (MASSTART) Program can help.

What is MASSTART?

MASSTART is a FREE service supported by the Massachu-setts Department of Public Health. Providers from

MASSTART help families and schools plan for the health care and safety of children with special health care needs,

especially those assisted by medical technology. They sup-port children so that they can attend schools safely.

MASSTART providers have extensive experience providing

health care services to children and adolescents with a wide range of complex health conditions and technology needs.

MASSTART providers work collaboratively with fami-

lies and school personnel to:

Help the school team understand the special health

care needs of the child Work with schools and families toward resolving the

issues affecting the child’s health needs during the

school day.

Train school personnel to meet the health care needs of

individual children. Assist in the development of the child's individual health

care plan and emergency plan for school.

Provide educational programs about children with spe-

cial health care needs in school.

Provide information, referral, and community resources.

For program and referral information contact:

Denise Guilbeault, LICSW MDPH Northeast Regional Office

365 East Street Tewksbury, MA 01876

Phone: 978-851-7261 x4022 Fax: 978-640-1027

E-mail:denise.guilbeault@state.ma.us

For more information: mass.gov/eohhs/gov/departments/

dph/programs/family-health/ma-technology-assistance-resource.html

Greater Boston-Northeast-Southeast Regions

Boston Children’s Hospital—Stephanie Porter, MSN, RN Contact info: 857-218-4333

Central Region

UMass Memorial Medical Center—Dorothy Page, FNP, MSN Contact info 508-856-4155

Western Region

Baystate Children’s Hospital—Carrie Somppi, RN, BS Contact info 413-794-9591

New Beginnings from the Director of Family TIES

—Laura Noble

Parent Perspective

8

THE PARENT LEADERSHIP PROJECT The EI Parent Leadership Project (EIPLP) strives to develop an informed parent constituency, promote leadership and lifelong advoca-cy skills for parents and family members, facilitate family participation to ensure that Early Intervention Services are family-centered

and support EI programs to identify, train and mentor families to take on roles across the EI and Early Childhood system. The Project is a parent driven endeavor, which continually seeks family involvement and input regarding the needs of families enrolled in Early

Intervention and is implemented by parents whose own children have received EI services. The Project staff consists of a Director, a Media Coordinator, a Statewide Monitoring Coordinator and a Statewide Training and Technical Assistance Coordinator. Please feel

free to contact any of them with your thoughts, suggestions, and concerns.

EI Parent Leadership Project Team

Darla Gundler 413-586-7525 Ext. 5863157

darla.gundler@state.ma.us

Faith Bombardier 413-586-7525 Ext. 5863119

faith.bombardier@state.ma.us

Kris Martone-Levine

978-851-7261 Ext. 1994057

kris.levine@state.ma.us

Liz Cox 413-586-7525 Ext. 5863116

liz.cox@state.ma.us

Contact Us: Toll-Free: 877-35-EI-PLP

Email: eiplp@live.com

On the web: www.eiplp.org

To receive the Parent Perspective Newsletter, a free publication, published three times a year by the Parent Leadership Project, call us toll-free at (877) 353-4757 and ask to be added to the EIPLP mailing list or email eiplp@live.com

NEXT DEADLINE: We welcome your input, suggestions for resources

and articles. The next deadline is April 15, 2017. Please call our toll-free number (877) 353-4757 or email the newsletter editor at kris.levine@state.ma.us.

The Parent Perspective newsletter is produced three times a year by the Early Intervention Parent Leadership Project, through funding from the Mas-sachusetts Department of Public Health. If you would like to be removed from this mailing list, please contact eiplp@live.com

The Parent E-Perspective newsletter is produced more often and available electronically. If you would like to be added to this mailing list, email us at eiplp@live.com or visit our FB page and click on Join My List.

Like the EIPLP page on FaceBook or follow EIPLP on Twitter!

23 Service Center

Northampton MA 01060

Want information “hot off the press?”

E-mail your name and e-mail address to: eiplp@live.com

We’ll add you to our email list!

IN THIS ISSUE Changing Perspectives . . . . . . . . . . . . . . . .1, 4 English and Español NCSEAM Survey Update . . . . . . . . . . . . . . . 2, 3 English and Español I Now Prefer the Word Opportunity. . . . . . 3, 4 English and Español Parent Resources . . . . . . . . . . . . . . . . . . . . . . .5 Family Opportunity. . . . . . . . . . . . . . . . . . . . . .6 Family TIES, MASSTART. . . . . . . . . . . . . . . . . .7