New England Center Deafblind Project

 

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Massachusetts Deafblind Family Alliance

Introduction to MADBFA
Meetings
Announcements

Introduction

We are a grassroots group united to promote and protect the interests of our family members with deafblindness. We endeavor to be the voice of those who cannot speak for themselves.

We do this by:

Parents providing support and mentoring to other families
Maintaining contact with state legislators to secure and maintain support services for Deafblind individuals
Providing networking information and resources to families
Networking with agencies:

  • New England Center Deafblind Project (NEC)
  • Massachusetts Commission for the Blind (MCB)
  • National Family Association for Deafblind (NFADB)
  • Department of Mental Retardation (DMR)
  • Helen Keller National Center (HKNC)
  • Hilton-Perkins Project
  • DB-LINK (National Information Clearinghouse)
  • DB Contact Center (DBCC)
  • Massachusetts Commission for the Deaf and Hard of Hearing
  • Federation for Children with Special Needs (FCSN)

For more information contact:

Delma Boyce, Family Specialist 617-972-7543
Djenne Morris, Family Specialist
Susan DeCaluwe, Educational Consultant
New England Center Deafblind Project
617-972-7516
Sue Summersby, Transition Coordinator
Perkins School for the Blind
617-972-7518
New England Center Deafblind Project
NEC@perkins.org

Music

Nalagaat
- Do Touch!

Thursday, June 24, 2004 at 7:00 p.m.

An Israeli theater production performed by deafblind actors who share their dreams and realities with the audience. Hailed by the press: "miracolous" "gloriuos" "impossible mix of humour and melodrama" "simply amazing" "the most surprising hit of the Israeli theater". Thursday, June 24, 2004 at 7:00 p.m. Perkins School for the Blind, Dwight Hall 175 N. Beacon St., Watertown, MA 02472 For Information: 617-972-7680  http://www.nalagaat.org.il

 

Announcements

ABC Grant Availability for Assistive Technology Needs for Persons that Qualify. Updated 10-08-2003

The Association for blind Citizens has established the Assistive Technology Fund to cover 50% of the retail price of adaptive devices or software. the ABC's board of directors believes that this program will provide blind and vusually impaired individuals access to technology products that will have a significant impact on improving employment opportunities, increase the level of independence and enhance their overall quality of life. The products covered by this program must retail for a minimum of $200 with a maximum retail price of $6,000. Persons eligible to apply for assistance must have a family income of less than $50,000 and cash assests of less than $20,000. Applicants must be legally blind and a resident of the United States to qualify for this program. Applications must be submitted by June 30th, September 30th and December 31st for each grant period (three per year). Contact: atf@assocofblindcitizens.org

Legislative Update 7-17-2003

Good News! The House and Senate have voted to override Governor Romney's veto of line items 4110-2000 and 4110-2001. This restores $150,155 to the account which supports individuals already receiving services and $36,500 to the account which is designated for the people who are turning 22 and will be needing services during FY '04. Once again, your calls and emails make a difference!

Please now take a minute to thank your Representative and Senator for their support.

Enjoy the Summer,
Sue Summersby

Legislative Alert 7-9-2003

The House goes back into session at 1PM today, July 9. It is expected that they will discuss the overrides of the MCB Deafblind Unit's line items either today or tomorrow. It appears that the Speaker may attempt to override only $100 million of the over $200 million vetoed by Governor Romney. It is important to contact your Representative as soon as possible and encourage him or her to restore line items 4110-2000 and 4110-2001.

Legislative Alert 7-8-2003

Massachusetts Governor Mitt Romney has vetoed the level-funding of the Massachusetts Comission for the Blind Deafblind Unit from the House Ways and Means Committee (see below for details). Please contact your state legislators and urge them to override the veto of line item 4110-2000.

Special Announcement!
An Update on the State Budget

The Governor's budget or House 1 which came out in February allocated $7,850,419 to the Massachusetts Commission for the Blind Deafblind Unit. Last week, the House Ways and Means Committee released their budget which directs $8,000,574 for the Deafblind Unit—an increase of $150,155! That is truly remarkable given that the House further cut the budgets of many other agencies and programs. These are very challenging times. I think that the small size of the Deafblind Unit and their relative budget played in their favor. However, I truly believe that the beautiful letters and testimonies provided by parents are the reason that the MCB Deafblind Unit is presently looking good budget-wise. Great job!

The next step in this process is for the Senate Ways and Means Committee to produce their budget, so we'll need to keep tabs on that.

-Sue Summersby


On Friday March 28, on behalf of the Massachusetts Deafblind Family Alliance and parent representatives, Zane Basile gave testimony to the House Ways and Means Committee Hearing at the Gardner Auditorium in the State House. Zane also submitted twenty letters to court officers who will copy and distribute them to the panel and to those addressed.

The hearing was respectfully moderated by Senator Tolman, who managed to maintain order and flexibility throughout the busy day. Multiple deserving agencies were represented on Friday. Zane’s turn came at 1:25 pm. She stood at the microphone, held up her daughter’s picture, and spoke with moving composure of the need for specialized support services for children and students with deafblindness. The panel thanked her for her message for being succinct and keeping to the three-minute allocation. By 1:36pm we were in a cab on our way home! The day was a considerable success.

Thank you for taking the time to write letters. Please continue to respond. Watch for future family alliance announcements on this page.


Passing Along a Message From Northshore ARC (Received April 8, 2003):

Attention: "People Who Rely on PCA Services"

We are writing to tell you of some bad news, and some good news, (and then some more bad news and some more good news...)

The Bad News:
The governor is making cuts to the PCA program, in an effort to reduce Medicaid spending.

The Good News:
The PCA rate is not being cut.

More Bad News:
The rate paid to provider agencies (like Northshore ARC) for skills training is being cut by about 1/3. Assuming we will be held to the current contractual obligations, this cut would mean that we won't be able to cover our costs and would be forced to close down our program. Other agencies across the State also face the possibility of closing their doors.

Without skills training, people can't get access to the services, can't learn how to run it, can't get support around being an employer, etc.

More Good News:
There is a forum for you to speak out about these cuts. While we are unable to stop the cuts for this fiscal year (emergency cuts went into effect on April 1, 2003), we can all let the state decision-makers know how devastating these cuts will be if they continue past July 1, 2003.

Please join us to protest these cuts. We need your help to convince the Governor to maintain this vital service!

When: April 22, 2003
Time: 10:00 A.M.
Where: The Transportation Building, 10 Park Plaza, Boston - Rooms 2 and 3, Second Floor


Legislative Alert

We wanted to give you updates on budget information and hearing dates on legislation.

It is expected that the House Ways and Means budget will be released on Wednesday, April 23 with amendments due by 5:00PM on Friday, April 25. Debate will begin on Wednesday, April 30.

We also wanted to share with you the hearing schedule for legislation before the Joint Committee on Human Services:

April 16: Department of Transitional Assistance
Gardner Auditorium, 10:00AM-4:00PM

April 29: Elders, Veterans
Gardner Auditorium 10:00AM-4:00PM

May 27: Department of Medical Assistance, Departmetn of Health Care Financing, Department of Public Health
Room B-2, 10:00AM-4:00PM

May 28, Department of Mental Retardation, Department of Mental Health
Gardner Auditorium, 10:00AM-4:00PM

June 4, Disabilities/Other
Gardner Auditorium, 10:00AM-4:00PM

June 18, Department of Social Services, Department of Youth Services, Office of Child Care Services
Gardner Auditorium


Tips for Testifying

Suggestions for parents testifying before various groups on topics related to their families' experience in health or education as parents of a child with special needs.
Adapted from Terry Ohlson-Martin and Robert Madison, New Hampshire

1. Be yourself! Someone asked you to testify because of who you are and what you and your family have experienced. Start off with your name, address, and the nature of your interest. You can mention any organization you are associated with if that is how you learned of the hearing.

2. Tell your story. The real, personal examples of your family and your child with special needs are what set you apart from others who might testify.

  • Talk about the daily experiences you and your family face.
  • Use pictures or graphics. Passing around a photo of your family makes your story even more real.
  • Provide written testimony. If possible, type it and have enough copies for the entire committee. Include your name, address and phone number. Don't expect anyone to read more than a page during the hearing. Have a list of your key points. If you need or want to submit long reports, give them to the staff of the people hearing testimony—preferably, a few days before the hearing.
  • Provide your ideas on solutions: What would have made a difference for you and your child? Try to be practical and specific.
  • Be factual. Always tell the story with concrete examples.
  • Be polite, courteous and respectful; it returns to you.
  • Control your temper. If you are losing control, provide written testimony only.
  • If there is specific legislation involved, explain how it will affect your child and family.
  • Do not be afraid. You are talking to people who may have experienced similar situations within their own families or through friends. You have an important contributiono to make to the policy makers and politicians present.

3. Keep it short. 5 minutes oral is enough.

4. Be prepared for questions. It's OK, however, to say, "I don't know." or "I feel..."

5. Do not be redundant. If someone before you has made the points you were going to make, agree with that person and don't repeat. Add your other points, though.

Before You Go

Allow plenty of time to be at the hearing—a half day at least. It helps to get a sense of what's happening before you testify.

Wear clothes that make you feel good and are comfortable.

After the Hearing

Thank members of thet committee, especially anyone who was especially helpful or sympathetic to your issues. Establish relationships with appropriate policymakers and their support staff. Encourage and support others to testify—don't always be the only one there.

Note: These tips also apply to one-on-one conversations with policy-makers.