Sunday, April 22, 2012

Where to Start-Massachusetts

MASSACHUSETTES EARLY INTERVENTION PROGRAM

Early Intervention in Massachusetts is a statewide, integrated, developmental service available to families of children between birth and three years of age. Children may be eligible for EI if they have developmental difficulties due to identified disabilities, or if typical development is at risk due to certain birth or environmental circumstances.
EI provides family-centered services that facilitate the developmental progress of eligible children. EI helps children acquire the skills they will need to continue to grow into happy and healthy members of the community.


Call the Central Directory for Early Intervention at 1-800-905-8437 (1-800-905-TIES) or visit www.massfamilyties.org for a listing of certified Early Intervention programs serving your city or town. Call and speak with a local Early Intervention program to make a referral.

 
EASTER SEALS:
Easter Seals provides services to ensure that children and adults with disabilities have equal opportunities to live, learn, work and play.

You can also reach Easter Seals at:
Worcester:
484 Main Street
Worcester, MA 01608
800-244-2756 (voice)
800-564-9700 (tty)
508-831-9768 (fax)
info@eastersealsma.org

Boston
89 South Street, 1st Floor
Boston, MA 02111
617-226-2640
617-737-9875 (fax)

New Bedford
256 Union Street
New Bedford, MA 02740

508-992-3128 (voice)
MEDICAID WAIVER PROGRAM:
The CLTS MA Waivers support children who are living at home or in the community who have substantial limitations in multiple daily activities as a result of one or more of the following disabilities:
  • Developmental disabilities
  • Severe emotional disturbances
  • Physical disabilities

TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.
GENETICS TESTING & COUNSELING AT UNIVERSITY OF COLORADO HOSPITAL
The Genetics Program at MassGeneral Hospital for Children specializes in the evaluation and care of patients who may have health problems with a genetic or metabolic basis.

55 Fruit Street
Boston, MA 02114
617-726-2000




COMPREHENSIVE DS PROGRAM AT DUKE UNIVERSITY
The Duke Comprehensive Down Syndrome Program was developed to provide family-centered medical care for individuals with Down syndrome. Using the guidelines developed by the Down Syndrome Medical Interest Group for systematic, preventative care, our physicians work in conjunction with the patient's primary care provider. The clinic team focuses on maximizing the development of individuals with Down syndrome by managing medical issues, connecting them with community resources, and teaching families to advocate for their children. The clinic has provided specialty care to over 1,000 patients and their families since its inception in 1995.

Lenox Baker Children's Hospital
3000 Erwin Road
Durham, NC 27705
Tel: 919-684-6669
Hours: First and third Thursdays of each month, 8 am - 3 pm


MASSACHUSETTS DOWN SYNDROME CONGRESS
Mission Statement
To ensure individuals with Down syndrome in Massachusetts are valued, included, and given the opportunities to pursue fulfilling lives by providing information, networking opportunities, and advocacy for people with Down syndrome and their families, educators, health care professionals, and the community-at-large.

Mailing address:
The MDSC
20 Burlington Mall Road
Suite 261
Burlington, MA 01803
Telephone: 781-221-0024
1-800-664-MDSC

MORNING TRAVELERS
In early 2003, three mothers with infants born with Down Syndrome met at the Professional Center's parent support group on a Wednesday evening. Although the adult conversation was helpful, the mothers - still overwhelmed by their new situation - decided to schedule a playdate so that they could get together with their children to focus on celebrating their new babies. Almost one hundred playdates later, Morning Travelers now serves more than one hundred families in the Merrimack Valley.

Contacts:
Sharon Randall 978-974-0191 morningtravelers@yahoo.com
Maura Fitzpatrick 978-251-9621 maurakfitz@gmail.com
Kathy Healy Norton 978-273-8994 healynorton@yahoo.com


BRIDGING THE GAP FAMILY SUPPORT GROUP FOR THE SOUTH SHORE AND CAPE COD

Bridging the GAP of EA/TEF (BTG) Support Group is devoted to fostering an ongoing relationship between family members and medical professionals. Esophageal Atresia/TreachoEsophageal Fistula is a rare birth defect in which many families are not prenatally diagnosed and even more so few physicians and medical professionals have knowledge of this birth defect. Because of the rarity and varying severity of this birth defect family members feel isolated and confused about how to deal with the condition. Likewise, some medical professionals, have difficulty in dealing with the diagnosis and treatments of this rare birth defect.

Infants and their families affected by EA/TEF need a support system to help them deal with the many issues surrounding the diagnosis of EA/TEF and other birth defects which may have formed.

Physicians and the medical community also need support in dealing with the diagnosis and treatment of EA/TEF. Many physicians and medical professionals will see very few if any patients with this birth defect. Because of this, EA/TEF is not a major part of medical school training. Therefore, physicians and medical professionals, as well, need support with these patients if they suspect a diagnosis and potentially must begin treatment.
The goal of the BTG Support Group is to gather information from each group of people involved (Family Members, Physicians, OB/GYNs, medical facilities) and disseminate that information to all. The BTG Support Group is an information center and a "Helping Hand" for affected people. It is only through the efforts of Family members and Physicians/Medical Professionals that BTG can reach many more people in need.

By sharing information, resources, and support the BTG Support Group will create a "Circle of Hope" for those affected by EA/TEF.



DS RESOURCE GROUP OF WESTERN MASSACHUSETTS
The Mission of the Down Syndrome Resource Group of Western Massachusetts is to discover, encourage, and embrace the potential of ALL individuals with Down syndrome. We will accomplish this by supporting the individual, their families, caregivers, and communities through outreach, unity, resources, community involvement and education.

220 Brookdale Drive Springfield MA 01104-3210
(413) 562-7395

SUPPORT, EDUCATE, MOTIVATE, ADVOCATE (SEMA)
60 Sullivan Avenue, Somerset, MA 02725
774-644-0356

THREADS
4 Southwich Street, Apt. 1, Middleboro, MA 02346
508-947-8497


THE ARC OF MASSACHUSETTS
The mission of The Arc of Massachusetts is to enhance the lives of individuals who have intellectual and developmental disabilities and their families. We accomplish this through advocacy of supports and services based in the community.
217 SOUTH ST, WALTHAM, MA 02453
781-891-6270 |
arcmass@arcmass.org

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