The Parent Leadership Project’s Parent Perspectiveeiplp.org/wp-content/uploads/2019/03/PLP... ·...
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“Families Make a Difference—Get Engaged!” Issue 118 – Fall 2018 (877) 35-EI-PLP ¨ www.eiplp.org ¨ [email protected] iContiene articulos en Español! The Parent Leadership Project’s Parent Perspective “Families who are engaged and are involved have children who thrive.” The 2018 Annual Early Hearing Detection and Intervention (EHDI) Conference By Jennifer Fleming As a parent of two children, one who was born profoundly deaf, I was proud and excited to head to Denver, CO to the Early Hearing Detection and Intervention (EHDI) Conference held on March 18 th – 20 th . This terrific conference brings to- gether parents and professionals from different states to share their experiences and learn from one another. The common goal of improving the lives of deaf and hard of hearing children everywhere, binds us all together. The first time I went to EHDI was several years ago when the conference was in Louisville, KY. I went as a parent rep- resentative on scholarship from the Massachusetts Universal Newborn Hearing Screening Program (UNHSP). It was an honor to be able to go and I was humbled by how much there was to learn. I picked different sessions that were of special interest to me, and that made it so much more meaningful. I was so impressed with the workshops, pre- senters and participants – by all those I met. I remember being struck by how lucky we are in Massachusetts, to have so many supports and services for our deaf and hard of hearing kids. I met many parents from other states who told me how they wished they had similar places to turn for sup- port. This year was even better than before. I went as a parent professional working with our state’s UNHSP along with four other parents sponsored by the UNHSP. It was great getting to know the other MA parents and learning from them. They are all terrific. There was an event held the first night to help connect parents from across the country. It turned into a dance/activity night. Putting my pride aside, I acted out the moves as best I could. I do wish I had brought other shoes (flats or tennis shoes preferred) – but that seemed like a minor detail! The night did not end there, part of our group continued on sharing stories and experiences as par- ents of deaf and hard of hearing children. We could have talked all night long. Individuals from MA presented at two sessions and had two poster presentations as well. Our own Dr. Amy Szarkowski from Children’s Hospital Boston presented at the opening session on day two. I was especially proud to co-present a session with Sarah Stone, the Director of the UNHSP. Our session called “Family Involvement and Leadership: Path- ways to Success for Families with Children who are Deaf and Hard of Hearing,” drew an audience of around 60 people. I was extremely nervous to be sure – particularly when the Power- Point would not load in the room 30 minutes before the session! Thanks to the computer experts on hand (who I profusely thanked after the presentation), we were all set and ready to go when our time came. We presented what you, as parents, already know. Families who are engaged and involved have children who thrive. In our presentation, we defined what family engagement is, gave examples, and talked about lead- ership opportunities. The im- portance of family is key. Our state does really well, in part, be- cause the parent and family perspective is so included and valued. Massachusetts works hard to encourage, support, and develop parent leaders to make positive changes in our state and beyond. I can personally speak to this and am grateful for the opportunities that have come my way. So, as I reflect on the conference this year I think about the importance of family. It is all about working together, cen- tered on family and our children. One parent presenter shared that by the time her daughter was 10 years old, she had worked with 34 different professionals related to her daughter’s hearing loss. This spoke to the power of parents’ expertise and the knowledge that they have of their child’s uniqueness; and to their knowledge of the systems that serve them. This is empowering. There is tremendous power in each one of us; we need to harness it for the good of our children. Conference highlights and presentations are available at www.ehdimeeting.org. The national EHDI website is www.infanthearing.org. Please check out our new page on the Department of Public Health (DPH) website! www.mass.gov/dph/newbornhearingscreening If you would like to learn more about EHDI or have an inter- est in getting more involved, please feel free to reach out to our program or contact me directly at jennifer.fleming @state.ma.us.
Transcript of The Parent Leadership Project’s Parent Perspectiveeiplp.org/wp-content/uploads/2019/03/PLP... ·...
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“Families Make a Difference—Get Engaged!” Issue 118 – Fall 2018
(877) 35-EI-PLP ¨ www.eiplp.org ¨ [email protected] iContiene articulos en Español!
The Parent Leadership Project’s
Parent Perspective
“Families who are engaged and are involved have children who thrive.” The 2018 Annual Early Hearing Detection and Intervention (EHDI) Conference
By Jennifer Fleming
As a parent of two children, one who was born profoundly
deaf, I was proud and excited to head to Denver, CO to the Early Hearing Detection and Intervention (EHDI) Conference
held on March 18th – 20th. This terrific conference brings to-gether parents and professionals from different states to
share their experiences and learn from one another. The
common goal of improving the lives of deaf and hard of hearing children everywhere, binds us all together.
The first time I went to EHDI was several years ago when
the conference was in Louisville, KY. I went as a parent rep-resentative on scholarship from the Massachusetts Universal
Newborn Hearing Screening Program (UNHSP). It was an honor to be able to go and I was humbled by how much
there was to learn. I picked different sessions that were of special interest to me, and that made it so much more
meaningful. I was so impressed with the workshops, pre-
senters and participants – by all those I met. I remember being struck by how lucky we are in Massachusetts, to have
so many supports and services for our deaf and hard of hearing kids. I met many parents from other states who told
me how they wished they had similar places to turn for sup-
port.
This year was even better than before. I went as a parent
professional working with our state’s UNHSP along with four
other parents sponsored by the UNHSP. It was great getting to know the other MA parents and learning from them. They
are all terrific. There was an event held the first night to help connect parents from across the country. It turned into
a dance/activity night. Putting my pride aside, I acted out
the moves as best I could. I do wish I had brought other shoes (flats or tennis shoes preferred) – but that seemed
like a minor detail! The night did not end there, part of our group continued on sharing stories and experiences as par-
ents of deaf and hard of hearing children. We could have
talked all night long.
Individuals from MA presented at two sessions and had two
poster presentations as well. Our own Dr. Amy Szarkowski
from Children’s Hospital Boston presented at the opening session on day two. I was especially proud to co-present a
session with Sarah Stone, the Director of the UNHSP. Our session called “Family Involvement and Leadership: Path-
ways to Success for Families with Children who are Deaf and Hard of Hearing,” drew an audience of around 60 people. I
was extremely nervous to be sure
– particularly when the Power-Point would not load in the room
30 minutes before the session! Thanks to the computer experts
on hand (who I profusely thanked
after the presentation), we were all set and ready to go when our
time came. We presented what you, as parents, already know.
Families who are engaged and involved have children who thrive.
In our presentation, we defined
what family engagement is, gave examples, and talked about lead-
ership opportunities. The im-portance of family is key. Our
state does really well, in part, be-
cause the parent and family perspective is so included and valued. Massachusetts works hard to encourage, support,
and develop parent leaders to make positive changes in our state and beyond. I can personally speak to this and am
grateful for the opportunities that have come my way.
So, as I reflect on the conference this year I think about the importance of family. It is all about working together, cen-
tered on family and our children. One parent presenter
shared that by the time her daughter was 10 years old, she had worked with 34 different professionals related to her
daughter’s hearing loss. This spoke to the power of parents’ expertise and the knowledge that they have of their child’s
uniqueness; and to their knowledge of the systems that serve them. This is empowering. There is tremendous power
in each one of us; we need to harness it for the good of our
children.
Conference highlights and presentations are available at www.ehdimeeting.org. The national EHDI website is
www.infanthearing.org. Please check out our new page on the Department of Public Health (DPH) website!
www.mass.gov/dph/newbornhearingscreening
If you would like to learn more about EHDI or have an inter-est in getting more involved, please feel free to reach out to
our program or contact me directly at jennifer.fleming @state.ma.us.
http://www.eiplp.orgmailto:[email protected]?subject=PLP%20Newsletterhttp://www.ehdimeeting.orghttp://www.infanthearing.orghttp://www.mass.gov/dph/newbornhearingscreeningmailto:[email protected]:[email protected]
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Every March and October, the NCSEAM Family Survey is distributed. If your
family has been enrolled in Early Inter-
vention (EI) for at least six months, you will receive a Family Survey. Ser-
vice coordinators hand deliver the Sur-vey, a letter explaining what the Survey
is and why it is important for you to fill it out. They also include a stamped, self-addressed enve-
lope for you to mail your completed Survey back.
Sharing your opinions helps make EI services better for all children and families!
NCSEAM Family Survey Update
The Parent Leadership Project’s
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 learn-ing of infants and toddlers through individualized, devel-opmentally appropriate intervention embedded in every-day activities.
Core Values: Respect ~ Individualization ~ Family Centeredness ~
Community ~ Team Collaboration ~ Life Long Learning
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
Receive our Newsletters, Events & Opportunities more quickly!
Email us at [email protected] and ask to be added to our email list!
HELP the EIPLP meet our goal of “750 likes!” on Facebook
AND
On November 13th, 2017, our daughter Sofia, was officially diagnosed with a very
rare genetic disorder, called Pitt Hopkins Syndrome. Pitt Hopkins is a neurological disorder affecting about 1,000 individuals worldwide. At the time of her diagnosis,
Sofia was one of only 14 cases confirmed in Massachusetts.
Through social media, we began connecting with other families whose children have
Pitt Hopkins around the world. We quickly learned about the Pitt Hopkins Research Foundation Conference held in Minnesota, in June 2018.
After learning about the conference, we knew we had to attend. Our lives changed
in an instant when we received Sofia’s diagnosis; including the financial im-
pacts. We knew that we needed to find a way to make it work. It was important for us to educate ourselves, learn from professionals, and most importantly meet
families who were on the same journey as we are.
Luckily, we began to learn about different funding options including some support that was available through the De-
partment of Public Health Office of Family Initiatives. We will forever be thankful that we received funds to help with the travel expenses of attending this Conference.
The Pitt Hopkins Research Foundation Conference was life changing for our family. We attended meetings on communi-
cation, everyday struggles of Pitt Hopkins, planning for the future, mom/dad breakout sessions, research towards a
cure, and much more!
We are grateful for the generous support we were given. We learned a great deal, but most importantly, we created lifelong friendships with those who have family members with Pitt Hopkins from around the world.
One of the many lessons I have learned this year is, ask. Do not be afraid to ask for help. There are benefits available for families just like ours, so keep on asking!
Early Intervention Parent Leadership Project
www.eiplp.org
Making Connections with Support from the Office of Family Initiatives By Stefanie Izzi
http://www.eitrainingcenter.orghttps://www.facebook.com/EIPLP-108236104290/mailto:[email protected]:[email protected]://www.twitter.com/EIPLPhttps://www.instagram.com/eiplp/http://www.eiplp.org
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Como madre de dos niños, uno de ellos con sordera pro-
funda de nacimiento, me sentía orgullosa y entusiasmada por viajar a Denver, Colorado, para asistir a la Conferencia
de Detección Auditiva e Intervención Tempranas (Early Hearing Detection and Intervention, EHDI), que tuvo lugar del 18 al 20 de mayo. Esta maravillosa conferencia reúne a
padres y profesionales de distintos estados para que pue-dan compartir sus experiencias y aprender del intercambio.
Lo que nos congrega es el objetivo común de mejorar las vidas de niños y niñas sordos y con dificultades auditivas
de todas partes.
La primera vez que asistí a la Conferencia EHDI fue hace varios años, cuando se realizó en Louisville, Kentucky. Fui
como representante de padres, con una beca del Programa Universal de Evaluación de la Audición en Recién Nacidos
(Universal Newborn Hearing Screening Program, UNHSP) de Massachusetts. Fue un honor para mí poder ir, y reco-nocer cuánto había para aprender. Hice una selección de
las sesiones que eran de especial interés para mí, y cobró mucho más sentido. Quedé impresionada con los talleres,
los presentadores y los participantes… con todos los que
conocí. Recuerdo que me sorprendió reconocer que en Massachusetts somos muy afortunados por tener tanta
ayuda y tantos servicios para nuestros niños y niñas con sordera e hipoacusia. Conocí a padres y madres de otros
estados que me dijeron que desearían tener lugares simila-
res a los que recurrir cuando necesitan ayuda.
Este año fue incluso mejor que los anteriores. Fui como
padre profesional que trabaja con el UNHSP de nuestro
estado junto con otros cuatro padres, con el auspicio del UNHSP. Fue fantástico conocer a los otros padres de MA y
aprender de ellos. Son todos maravillosos. Hubo un evento la primera noche para ayudar a conectar a padres de todo
el país. Resultó ser una noche de baile / actividades. Ha-
ciendo a un lado mi orgullo, hice los movimientos como mejor pude. Deseé haber traído otro calzado (zapatos sin
taco, o zapatillas, preferentemente), ¡pero eso parecía un detalle menor! La noche no terminó allí: parte de nuestro
grupo siguió compartiendo historias y experiencias como padres de niños sordos y con dificultades auditivas. Podría-
mos haber seguido conversando toda la noche.
Las personas de MA presentaron en dos sesiones y tam-bién tuvieron dos presentaciones de pósteres. Incluso la
Dra. Amy Szarkowski del Hospital de Niños de Boston pre-
sentó en la sesión de apertura de la segunda jornada. Fue un gran orgullo para mí co-presentar una sesión con Sarah
Stone, la Directora del UNHSP. Nuestra sesión, llamada “Participación familiar y liderazgo: caminos al éxito para
familias con niños sordos y con difi-
cultades auditivas”, contó con un público de unas 60 personas. Sin
duda, me sentía muy nerviosa, ¡especialmente porque no se podía
cargar el PowerPoint en la sala 30
minutos antes de la sesión! Gracias a los expertos en computación que
estaban a mano (a quienes agradecí mucho después de la presentación),
todos estuvimos listos para arrancar cuando llegó el momento. Presenta-
mos lo que ustedes, como padres, ya
saben. Las familias que se ocupan y se comprometen tienen niños que
progresan. En nuestra presentación, definimos lo que signi-fica el compromiso familiar, dimos ejemplos y hablamos de
oportunidades de liderazgo. La importancia de la familia es
clave. A nuestro estado le va realmente bien, en parte, porque la perspectiva de los padres y la familia se tiene
muy en cuenta y se valora. Massachusetts trabaja mucho para alentar, apoyar y desarrollar a líderes parentales para
que operen cambios positivos en nuestro estado y en un contexto más amplio. Personalmente puedo dar testimonio
de ello y estoy agradecida por las oportunidades que se me
han presentado.
Al reflexionar sobre la conferencia este año pienso en la importancia de la familia. Se trata de trabajar juntos, cen-
trados en la familia y en nuestros niños y niñas. Una madre que presentó, compartió que cuando su hija cumplió los 10
años de edad, había trabajado con 34 profesionales dife-rentes por la pérdida de audición de su hija. Esto habla del
poder de la sabiduría de los padres y el conocimiento que
tienen de la singularidad de sus hijos, además de conocer los sistemas que les proporcionan servicios. Genera empo-
deramiento. Hay un enorme poder en cada uno de noso-tros; debemos aprovecharlo para el bien de nuestros hijos
e hijas.
Los resúmenes con lo más destacado y las presentaciones de la conferencia están disponibles en
www.ehdimeeting.org. El sitio nacional de internet de EHDI
es www.infanthearing.org. ¡Visite nuestra nueva página en el sitio de internet del Departamento de Salud Pública
(DPH)! www.mass.gov/dph/newbornhearingscreening
Si desea más información sobre EHDI o le interesa partici-par más, póngase en contacto con nuestro programa o
conmigo directamente, [email protected].
“Las familias que se ocupan y comprometen tienen niños que progresan.” Conferencia Anual de Detección Auditiva e Intervención Tempranas 2018 (EHDI)
Por Jennifer Fleming
Boletín En la Perspectiva de los Padres del Proyecto de Pa-dres Líderes del programa de Intervención Temprana
(877) 35-EI-PLP ¨ www.eiplp.org ¨ [email protected] Número 118 - Otoño de 2018
http://www.ehdimeeting.orghttp://www.infanthearing.orghttp://www.mass.gov/dph/newbornhearingscreeningmailto:[email protected]://www.eiplp.orgmailto:[email protected]?subject=PLP%20Newsletter
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El día 13 de noviembre
de 2017, a nuestra hija Sofía le diagnosticaron
oficialmente un de-sorden genético muy
poco frecuente, llamado
Síndrome de Pitt Hop-kins. Pitt Hopkins es un
desorden neurológico que afecta a unas de
1.000 personas en todo el mundo. Al momento de su diagnóstico, Sofía era uno
de los 14 casos confirmados en Massachusetts.
A través de las redes sociales, comenzamos a conectar-
nos con otras familias de todo el mundo cuyos niños tienen Pitt Hopkins. Rápidamente supimos sobre la
Conferencia de la Fundación de Investigación de Pitt
Hopkins en Minnesota prevista para junio de 2018.
Al enterarnos acerca de la conferencia, supimos que debíamos asistir. Nuestras vidas cambiaron en un in-
stante cuando recibimos el diagnóstico de Sofía; in-
cluyendo los impactos financieros. Sabíamos que debíamos lograr que las cosas funcionen. Fue im-
portante para nosotros informarnos, aprender de los profesionales, y por sobre todas las cosas, conocer fa-
milias que estuvieran en nuestro mismo rumbo.
Afortunadamente, comenzamos a enterarnos acerca de
diferentes opciones de financiamiento, incluyendo ayuda que se encontraba disponible a través de la
Oficina de Iniciativas para las Familias del Departamen-
to de Salud Pública. Por siempre estaremos agrade-cidos de haber recibido los fondos que nos ayudaron
con los gastos de viaje para asistir a esta Conferencia.
La Conferencia de la Fundación de Investigación de Pitt
Hopkins fue fundamental para nuestra familia. Asisti-mos a encuentros sobre comunicación, sobre las difi-
cultades cotidianas de Pitt Hopkins, sobre cómo planear el futuro, sobre grupos de análisis para papás/mamás,
sobre la investigación orientada a una cura, ¡y mucho
más!
Estamos muy agradecidos por la generosa ayuda que hemos recibido. Aprendimos mucho, pero por sobre
todo, generamos amistades para toda la vida con
aquellos que tienen familiares con Pitt Hopkins en el resto del mundo.
Una de las lecciones más importantes que aprendí este
año es, cómo buscar. No tengan miedo de buscar
ayuda. Hay beneficios disponibles para familias ex-actamente como la nuestra, ¡así que no dejen de bus-
car!
Haciendo conexión a través del apoyo de la Oficina de Iniciativas para las Familias
Por Stefanie Izzi
División para Niños y Jóvenes con Necesidades Especiales
La División para Niños y Jóvenes con Necesidades Especiales del Cuidado de la Salud (DCYSHN, por sus siglas en inglés)
atiende a niños desde su nacimiento hasta los 22 años,+ y a sus familias. La División trabaja junto a las familias, los
proveedores de salud y la comunidad para dar apoyo a niños y
jóvenes con necesidades de salud especiales. Se incluyen los siguientes programas, entre otros: Línea de
Apoyo a la Comunidad (Community Support Line); Coordi-
nación de Cuidados (Care Coordination); Fondo de Ayuda para Niños con Enfermedades Catastróficas (Catastrophic Illness in
Children Relief Fund): Iniciativas para la Familia (Family Initia-tives); Lazos Familiares (Family TIES); MASSTART; Cuidados
Paliativos Pediátricos (Pediatric Palliative Care); Monitoreo Au-ditivo Universal para Recién Nacidos (Universal Newborn
Hearing Screening ) y más. Para conectarse con alguno de los
programas, comuníquese con nuestra Línea de Apoyo a la Co-munidad al 800-882-1435. O averigue más visitando
www.mass.gov/dph/specialhealthneeds y encuéntrenos en Facebook en www.facebook.com/MDPH.CYSHCN.Program. La Línea de Apoyo a la Comunidad del Departamento de Salud
Pública (DPH, por sus siglas en inglés) sirve como “entrada” el Programa DCYSHN. Esta línea gratuita para todo el estado
ofrece información, asistencia técnica, y remisiones (referrals)
a familias cuyos niños tienen necesidades de salud especiales y a sus proveedores. Especialistas en Recursos Comunitarios
experimentados se encuentran a disposición de lunes a viernes, de 9:00 am a 5:00 pm y pueden responder llamados
en diferentes idiomas. Para obtener ayuda y conocer más
acerca del Programa DCYSHN del Departamento de Salud Pú-blica contáctese con la Línea de Apoyo a la Comunidad al: 800
-882-1435 o 617-624-6060 TTY: 617-624-5992 O encuén-trenos en línea en: www.mass.gov/dph/specialhealthneeds Programa de Crecimiento y Nutrición
El Programa de Crecimiento y Nutrición (GNP, por sus siglas en inglés) que depende de la División de Nutrición de la Ofici-
na de Salud y Nutrición de la Familia (BFHN, por sus siglas en
inglés) es un programa que la Legislatura de Massachusetts inició hace más de 30 años para atender el problema de des-
nutrición de niños pequeños en el Estado. Para acceder a una lista de lugares e información de contacto, visite
www.mass.gov/ dph/growthnutrition. Para mayor información acerca del GNP contáctese con Julie Schaeffer, Nutricionista
del Estado a través de [email protected] o del 617-
624-6140. Equipo de Recursos de Ayuda Tecnológica de MA La transición escolar de niños con necesidades de salud espe-
ciales puede presentar dificultades, en particular si ellos reci-ben asistencia de tecnología médica. El Programa del Equipo
de Recursos de Ayuda Tecnológica de Massachusetts (MASSTART, por sus siglas en inglés) puede ayudar. Para
mayor información: mass.gov/eohhs/gov/departments/dph/
programs/family-health/ma-technology-assistanceresource.html
DPH en Foco
Programas de DPH que ayudan a las familias
http://www.mass.gov/dph/specialhealthneedshttp://www.facebook.com/MDPH.CYSHCN.Programhttp://www.mass.gov/dph/specialhealthneedsmailto:[email protected]
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Family TIES is a statewide parent-to-parent information and support network for families of children special health needs, chronic illnesses or disability, and their professional partners. We are a proud Alliance Member of Parent to Parent USA, a national organization that provides technical assistance to parent-to-parent programs across the country. Family TIES of Massachusetts is a project of the Federation for Children with Special Needs, with funding from and in collaboration with the Massachusetts Department of Public Health, Divi-sion for Children & Youth with Special Health Needs. For more information or resources, call 1-800-905-TIES (8437)
Parent Perspective
DPH Spotlight
DPH Programs that Support Families
Federation for Children with Special Needs
www.fcsn.org
Turning Three—Information about what you need to know when transitioning your child from Early Intervention
(EI) to special education.
Basic Rights—Provides families with basic information
about their child’s rights in special education. Includes fed-eral and state special education laws, special education
process, parent and student rights and how to resolve dif-ferences with the school.
An IEP for My Child— Explains the Individual Education
Program (IEP) document, its development, how to write a
vision and annual goals, monitor a child’s progress and understand how the plan supports their student.
Family TIES of Massachusetts
Division of Children and Youth with Special Health Needs
The Division for Children & Youth with Special Health Care Needs serves children birth to 22 and their families. The
Division works with families, providers and the community to support children and youth with special health needs.
The many programs include: Community Support Line;
Care Coordination; Catastrophic Illness in Children Relief Fund: Family Initiatives; Family TIES; MASSTART; Pediat-
ric Palliative Care; Universal Newborn Hearing Screening
and more. To get connected, contact our Community Sup-port Line at 800-882-1435. Or learn more by visiting
www.mass.gov/dph/specialhealthneeds and find us on Facebook at www.facebook.com/MDPH.CYSHCN.Program.
The Community Support Line at DPH serves as the
"gateway" to the DCYSHN Program. This toll-free statewide line offers information, technical assistance, and
referrals to families whose children have special health
care needs and their providers. Experienced Community Resource Specialists are available Monday through Friday
from 9:00 am to 5:00 pm and can respond to callers in multiple languages. For help and to learn more about the
Department of Public Health's DCYSHN Program contact the Community Support Line at: 800-882-1435 or 617-624
-6060 TTY: 617-624-5992 Or find us on line at:
www.mass.gov/dph/specialhealthneeds
Growth & Nutrition Program The Growth and Nutrition Program (GNP) under the Nutri-
tion Division in the Bureau of Family Health & Nutrition (BFHN) is a program established over 30 years ago by the
Massachusetts Legislature to address the problem of un-dernutrition among young children in the Commonwealth.
For a listing of all locations and contact information, visit
www.mass.gov/ dph/growthnutrition. For more infor-mation about the GNP contact Julie Schaeffer, State Nutri-
tionist at [email protected] or 617-624-6140.
Massachusetts Technology Assistance Resource Team 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. For
more information: mass.gov/eohhs/gov/departments/ dph/programs/family-health/ma-technology-
assistanceresource.html
Federation for Children with Special Needs (FCSN)
Visions of Community Conference
Saturday, March 9, 2019 Seaport World Trade Center
1 Seaport Lane, Boston, MA
MA Early Intervention Consortium
MEIC Conference Monday, May 6 and Tuesday, May 7, 2019
Best Western Royal Plaza Hotel & Trade Center 181 Boston Post Road West, Marlborough, MA
SAVE THE DATES
http://www.fcsn.org/http://www.mass.gov/dph/specialhealthneedshttp://www.facebook.com/MDPH.CYSHCN.Programhttp://www.mass.gov/dph/specialhealthneedsmass.gov/eohhs/gov/departments/%20dph/programs/family-health/ma-technology-assistanceresource.htmlmass.gov/eohhs/gov/departments/%20dph/programs/family-health/ma-technology-assistanceresource.htmlmass.gov/eohhs/gov/departments/%20dph/programs/family-health/ma-technology-assistanceresource.html
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THE PARENT LEADERSHIP PROJECT The EI Parent Leadership Project (EIPLP) strives to develop an informed parent constituency, promote leadership and lifelong advocacy 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 Inter-
vention and is implemented by parents whose own children have received EI services. The Project staff consists of a Project Director, a Statewide Family Engagement and Collaboration Coordinator, a Media Coordinator, a Statewide Monitoring Coordinator and a Statewide
Training and Technical Assistance Coordinator. Feel free to contact any of them with your thoughts, suggestions, and concerns.
EI Parent Leadership Project Team
Faith Bombardier 413-586-7525 Ext. 3119
Liz Cox 413-586-7525 Ext. 3116
Roxanne Hoke-Chandler
781-828-7205 [email protected]
Kris Martone-Levine
978-851-7261 Ext. 1994057 [email protected]
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Toll-Free: 877-35-EI-PLP
Email: [email protected]
On the web: www.eiplp.org
To receive the Parent Perspective Newsletter, a free publication, published in hard copy four times a year, and online more often 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 [email protected]
NEXT DEADLINE: We welcome your input, suggestions for resources and articles. The next deadline is February 15, 2019. Please call our toll-free number (877) 353-4757 or email the newsletter editor at [email protected].
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