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HOME FIRST
Jeanne Clapper, Family Support Coordinator
Maria Sileshi, Case Manager
August 2011 |
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News for You and Your Family |
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Welcome to our very first newsletter!
Caring for a child with complex medical needs often isolates and overwhelms the strongest of families. We fully understand the unique challenges of caring for a child/young adult with complex medical needs, developmental and intellectual disabilities. We understand because we have been there. Read on to learn more about the individuals who are part of the Home First Program and resources we use to help our families.
Through this newsletter we hope to support a greater number of families by reaching out and connecting you with resources and programs that may help you along your journey.
We hope you find worthwhile, valuable information and look forward to your feedback and ideas! Please feel free to share this newsletter, but remember that our enhanced family support services are only by referral from the Department of Developmental Services (DDS). |
About the Home First Program
Home First provides intensive support and case management for children and young adults, who meet DDS eligibility and criteria of complex medical issues, who are living at home with their families. Referrals throughout the Metro Region (Boston and suburbs) are made by the local DDS Office. Services include coordination of medical services and health care benefits, assistive technology, coordination of home nursing, educational services, assistance with home modifications and assistance with public benefits. |
 Jeanne Clapper - About Me...I have been the coordinator of the Home First Program since July, 2007. At that time my youngest child was heading off to first grade, my middle child was entering middle school and my oldest was attending Kennedy Day School.
 Although I wasn't actively looking for work at that time, a member of the special needs community whom I had contacted as a resource mentioned this opening at HMEA. Immediately upon learning more about it, I was hooked! Helping other parents, like myself, navigate the maze of special needs services (or sometimes lack thereof) was near and dear to my heart. While trying to advocate for my daughter's needs, I sometimes became overwhelmed, defeated or I was just plain exhausted! Yet, each time I met another parent of a child with special needs, especially those with significant challenges, I gravitated to them to share resources, understanding and connection....that very special bond that we parents of children with special needs find when we are in the company of others who walk a similar path. This newsletter is for each of you and for those who support us in this journey. |
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Maria Sileshi - About Me... 
I joined HMEA in January of 2011 after seeing an email from Jeanne Clapper giving notice of the job opening on the MassFamily Voices list serve, a list serve for families of loved ones with special needs and professionals in the field as well. As a parent of a child with special needs, I had found the list serve extremely resourceful in accessing services for my daughter and also connecting with other parents. Little did I know that it would lead me to a position that has been an amazing gift to me not only professionally but also personally. I am enjoying meeting
the families that I work with, I learn so much from the strength, wisdom and beauty that each has.
For the last 8 years prior to joining HMEA, I have worked in not for profit organizations in Massachusetts as an advocate and case manager for families and children, for four years in the adoption and humanitarian aid field in the US and Africa, for two years doing diversity advocacy, for another two years supporting immigrant and refugee families in the US access services. I enjoy doing the work of supporting and empowering families, and I look forward to continuing this work at HMEA and supporting you in any way that I can. |
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About HMEA
HMEA provides superior services to 2400 children and adults with significant developmental disabilities such as autism, Down syndrome and cerebral palsy. Our supports include education, residential, day habilitation, employment and family resource support. We are committed to creative strategies that increase community inclusion and independence. Incorporated in 1961, we have a long history of providing special education, residential, employment, and case management services. We have long believed in the "power of dreams": helping people to realize their dreams and to become active and productive members of their community. "We believe in the power of dreams and NOT the limitations of disabilities. Reach out for Independence.
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In This Issue
(click on subject to view)
MEDICAL SPECIFIC RESOURCES
* Deaf/Blind
* Trach Care
SEASONAL RESOURCES
* Back to School
GENERAL RESOURCES
* Health Care Plans
EVENTS
* Wrightslaw Special Ed Law and Advocacy Training |
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HMEA's Family Supports Director
Cindy Olmsted |
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Deafblind Resources
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The New England Consortium of DeafBlind Projects
The New England Consortium of Deafblind Projects (NEC) provides technical assistance to children who are deafblind in Connecticut, Maine, Massachusetts and New Hampshire, as well as to their families and educational programs. Perkins is the sponsoring agency and assumes overall responsibility for this multi-state project, which was founded in 1969. NEC's central office staff is housed on the Perkins campus, with satellite offices and staff located in each of the other states.
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Parent Road Map
Your Guide to Raising a Child with
Combined Hearing and Vision Losses
http://www.dbproject.mn.org/parentRoadMapManual.html
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As the parent of a child with deaf-blindness, you face many challenges every day. You have hopes and dreams for your child, and you want their educational services to help them develop and learn.
The Perkins School for the Blind worked with experts in deaf-blindness, including state deaf-blind projects, to develop Deafblindness: Educational Service Guidelines (the Guidelines). These guidelines provide state and local education agencies a framework to support the development of meaningful, appropriate programming for students with deaf-blindness.
In 2010-2011, the Perkins School for the Blind collaborated with the Statewide Parent Advocacy Network (SPAN), state deaf-blind projects, and families of children with deaf-blindness, to develop resource materials for families of children with deaf-blindness based on the Guidelines. The resource materials (also available in Spanish) through Perkins include fact sheets, IEP mini-guides and meeting checklists, as well as transition to Adult Life resources.
These valuable resources can be found below:
Addtional publications and resources as well as resources in Spanish are available through Perkins website here:
http://www.perkins.org/resources/educational-publications/deafblindness-educational-service-guidelines/
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Resources for Tracheostomy Care
 | | Young Boy with Trach at Beach |
I just LOVE that picture!!
Two children's books about living with a trach that I've come across are:
Breathing Easy: A Trach at Home is an article written by a local Mom who's daughter was able to eventually have her trach removed and breathe on her own. It's a story of hope and understanding for all who are walking down this path.
TrachCare: TrachCare is a registered 501(c)(3) non-profit organization created to provide support and information to parents, caregivers and healthcare providers of children who have, or previously had, a tracheostomy and children who are on ventilator support. It was founded in 2004 by parents in Massachusetts who have children with trachs.
The mission of TrachCare is to provide a means for families who share similar experiences of caring for children with trachs to:
- Connect with each other.
- Share relevant resources and information.
- Promote an advocacy-focused network.
TrachKids: TrachKids mission is to creating public awareness for kids with complex medical needs, as well as strength and unity for the global community of families experiencing life with tracheostomy.
In association with Tracheostomy.com, the TrachKids community website is all about real-life kids with Tracheostomies.
Information is necessary for parents of medically challenged children; however, what often helps parents most is knowing that they are not alone. At TrachKids you will find many heroes with all sorts of challenges, but they all have one thing in common, tracheostomies! |
Resources on School Health and Health Care Plans
Beginning a new school year whether returning to the same school or starting in a new placement should trigger thoughts of reviewing your child's Individualized Health Care Plan. It's a good idea to send along a copy to the classroom teacher, aide and nurse as a reminder for them to review prior to your child being in their care.
- Individual Health Care Plans - Every child with special health care needs in school should have an Individualized Health Care Plan (IHCP). An IHCP helps to make sure your child receives the health services he or she needs during the school day. There is no law that says your child has a right to an IHCP. If your child has a specific health problem, you should ask for an IHCP.
- Mass Start - A free collaborative service that helps families and schools plan for the health care and safety of children and adolescents with special health needs, especially those assisted by medical technology. By ensuring safety in school for children with complex needs, MASSTART (Massachusetts Technology Assistance Resource Team) can help families and schools feel more comfortable about how a student's medical needs will be met during the school day. Regional MASSTART staff provide consultation to families and school staff to address individual health care plans. They can speak knowledgeably about coordination of services, provide written information and resources, and if requested, can provide training that school staff may need. MASSTART supports the educational goal of placement in the least restrictive setting. MASSTART staff is also available by phone and e-mail to provide technical assistance. Brochures, in English, Espanol and Portuguese are available at http://www.mass.gov/dph/fch/masstart.htm
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Upcoming Events
9/16/2011: Boston (Jamaica Plain), FREE Basic Rights in Special Education by the Federation for Children with Special Needs, Espanol, Martha Eliot Ctr, 75 Bickford St, 10am-12noon Register: http://fcsn.org/pti/workshops/home.php#schedule
Derechos Básicos en Educación (Spanish): Esta taller le informa a los padres de familia sobre sus derechos y responsabilidades bajo la Ley para la Educación de Individuos con Discapacidades (IDEA - por sus siglas en Ingles) y la Ley de Educación Especial de Massachussets. Está diseñado para guiar a los padres de familia a aprender como trabajar efectivamente con la escuela, como decidir si el niño es elegible para recibir educación especial, como planear, como tomar decisiones y hacerle un seguimiento al progreso educativo de su niño. Los materiales del taller están disponibles en Español, Portugués y Ciñese.Los empleados de la Federación que UD. asiste este taller primero para que tenga una mejor comprensión de la información proporcionada en nuestros otros talleres.
Basic Rights in Special Education: This workshop provides families with an introduction to their rights and responsibilities under the Individuals with Disabilities Education Act (IDEA), Massachusetts Special Education Law and No Child Left Behind (NCLB). It is designed to help parents learn how to be effective partners with their child's school to decide the child's eligibility for special education, and to plan, make decisions and monitor their child's progress in school. Workshop materials are also available in Spanish, Portuguese and Chinese. Federation staff suggest that you attend this workshop first in order to better understand our other workshops. School districts typically pay for a Basic Rights workshop except for qualifying MassPAC member districts who receive it free of charge.
10/27/2011: Wrightslaw Special Education Law and Advocacy Training, Leominster. All day Special Education Law and Advocacy Training sponsored by the Autism Resource Center of Central Massachusetts with speaker Pete Wright will focus on learn more about special education law, education law, and advocacy for children with disabilities. Registration can be processed though HMEA's Autism Resource Center online link:
https://app.etapestry.com/cart/HMEA-HoraceMannEducational/default/category.php?ref=162.0.87530577
11/4/2011 & 11/5/2011: Planning a Life: Making the Most out of High School
A Transition Conference, Worcester or 2/4/2012 & 2/5/2012, Boston. For families in Boston, Worcester and Springfield registration is FREE!
Planning a Life: Making the Most out of High School is a two day conference packed with Transition planning information and resources for and about students in special education ages 14-22. Topics include the Vision development and self advocacy issues; Transition Planning Form and how to develop individualized Transition goals; Housing, Postsecondary & Employment options and more. Transition planning needs to be on schedule to insure a systematic and purposeful educational experience.
More information and registration information can be found here: http://fcsn.org/pti/workshops/transition.php
Don't forget to apply for funding for conferences through the Massachusetts Developmental Disabilities Council (MDDC), Council Empowerment Funds program. Call 617-770-7676, ext 115 or visit the Council Empowerment Funds Program Web site. The Massachusetts Developmental Disabilities Council provides funds for individuals who are legal residents of Massachusetts with developmental disabilities and/or a family member or guardian to attend conferences or other events in Massachusetts or another state. Applications must be received and approved before the event. The Council will respond to requests based on set program guidelines.
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Disclaimer
HMEA/HomeFirst provides no warranty, whether express or implied, of the merchantability of the Software or its fitness for any particular purpose. In no circumstances will HMEA/HomeFirst be liable for any damage, loss of profits, good-will or for any indirect or consequential loss arising out of your use of the Software, or inability to use the Software, even if HMEA/HomeFirst have been advised of the possibility of such loss.
By downloading software or clicking on links, you agree to the terms of this disclaimer. |
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