EXAMPLES OF CORRESPONDENCE RELATING TO
DS INFORMATION BILL IN MARYLAND
EMAIL SENT TO DS ADVOCATES TO ORGANIZE “DROP DAY” IN ANNAPOLIS:
Thank you all for agreeing to come to Annapolis to lobby for SB-654, the Down
Syndrome Information Bill. We have an advocate from nearly every county on
this list, so we should be well-covered (but we still need more so let me know if
you have friends who want to join us). Please review the following details and let
me know if you have questions.
SCHEDULE
We will meet at 8:00am Wednesday morning at the offices of the Maryland
Catholic Conference, 10 Francis Street, Annapolis. It is just a block from the
State House buildings and we can use it as our "home base". They have been
wonderful partners in this effort and will lead us around, as well as feed us
lunch! Beware that they are also expecting a school group to come through that
day, so it may be a little hectic and crowded but we'll manage.
At 8:15/8:30, I will review with you what we will need to do. We will be fanning
out to various Delegates' offices to "drop" one-pagers about the bill, and trying to
get face time with staff (or the Delegate) to briefly discuss the bill. Will share
more tips and talking points in person on Wednesday, as well as contact
information for the delegates' offices.
By 9:00, we will be up in the House buildings starting to walk around. We will
have meetings and pop-ins all morning and into the afternoon, probably ending
around 2 or 3. If you can't stay the whole time, no problem, just let me know your
expected hours. If you are planning to come after 8:45, please let me know and
we may have to arrange a different meet-up location.
APPOINTMENTS
Some of you have asked me if you should be making appointments with your
legislators. Yes...and no. There are some KEY delegates that we would like to
get appointments with -- those on the Health & Government Operations
committee, those in leadership positions, and those who are just generally very
well-respected and considered to be "leaders." I will be contacting you
individually with a list of delegates (probably from your county) with whom I would
like you to contact to request appointments (MCC has advised us that these are
the key people). Please know that it is very normal NOT to be granted an
appointment, especially on such short notice and at such a hectic time. That's
ok, we will still do "pop-ins" to these offices but appointments are better so let's
try to get them. If you ARE granted an appointment, please let me know the time
and with whom it will take place. I will keep a master schedule of appointments
for all of us.
WHAT TO WEAR AND BRING
Business attire and wear comfortable shoes - you will be walking a lot. Bring a
bag or briefcase so you can carry leave-behind materials. We will be giving
these materials to you at the MCC office on Wednesday morning. A photo of
your child is always a good conversation starter. If you have submitted written
testimony already, you may want to bring a few extra copies to leave behind at
any meetings with your own county's delegates -- they will be particularly
interested in testimony about bad experiences from hospitals in their own county.
PARKING
There is free parking at St. Mary's Church lot, behind the church and toward the
back -- it is about 0.3 miles to the MCC office. Address is 113 Duke of
Gloucester St., Annapolis. Walk out of the church lot, go left on Duke of
Gloucester, right on Green St., left on Main St., Right on Francis street; the MCC
office is in a house on your right. Put a note in your windshield that says
"Guest of Maryland Catholic Conference." There are also paid parking lots
closer to the State House if you'd prefer not to walk.
That's it for now! Please email me with questions or concerns. Thanks so much
and I look forward to working with all of you on Wednesday!
EXAMPLE OF MEETING REQUEST WITH LEGISLATOR:
From: Heather Sachs <heatherbsachs@gmail.com>
Subject: Request for support on SB-654, Down Syndrome Information Bill
Date: March 17, 2014 11:38:17 AM EDT
To: peter.murphy@house.state.md.us
Dear Delegate Murphy,
I am writing as a member of the Maryland Down syndrome Advocacy Coalition
(MDAC), which represents thousands of families across Maryland who have a
family member with Down syndrome. We are requesting your support on SB654, the Down syndrome information bill. My colleagues and I will be in
Annapolis on Wednesday March 19 and would love the opportunity to
briefly meet with you or your staff about this bill.
Unfortunately, health care providers across the state are consistently distributing
inaccurate, outdated information to patients who receive a Down syndrome
diagnosis. For example, when my daughter was born several years ago, we
received pamphlets from the 1970s that used offensive words like "mongoloid"
and told us we should put her in an institution. Unfortunately, this problem is
pervasive throughout Maryland. Although accurate, up-to-date materials that
have already been developed by the national Down syndrome groups with the
assistance of medical experts do exist and are offered free of charge to health
care providers, they are not being requested by the Maryland health care
providers and are not being distributed to patients. Receiving a life-altering
diagnosis of Down syndrome is hard enough; but then receiving such antiquated
materials from the health care professional delivering the diagnosis is
devastating and inexcusable. Health care providers are also failing to provide
information about local support groups and resources, which are so important to
families who are navigating these difficult waters.
SB-654, the Down Syndrome Information Bill, would require the Maryland
Department of Health to provide to health care providers (and health care
providers to distribute to patients) the accurate, up-to-date materials developed
by national Down syndrome groups and widely accepted in the Down syndrome
community that provide current information about Down syndrome and local
resources to help families (see www.lettercase.org for an example). In this
information age, Maryland families deserve the most accurate and updated
information possible from their health care providers.
We hope that we can count on you for your support when the bill comes over to
the House. I have attached a one-pager about the bill (which has passed Senate
Finance and will be voted on in the Senate today). Please let me know if you or
your staff would be willing to meet with me on Wednesday March 19 to discuss
this further. Thanks so much!
EXAMPLE OF EMAIL ASKING LEGISLATOR FOR SUPPORT:
From: Heather Sachs <heatherbsachs@gmail.com>
Subject: PLEASE SUPPORT SB-654, DOWN SYNDROME INFO BILL
Date: April 1, 2014 10:33:22 PM EDT
To: bonnie.cullison@house.state.md.us
Dear Delegate Cullison,
My name is Heather Sachs, and I am writing on behalf of the Maryland Down
Syndrome Advocacy Coalition, which serves over 2000 families across Maryland
who have a family member with Down syndrome. I also serve on the Board of
Directors of the Down Syndrome Network of Montgomery County. I am writing to
ask you to support SB-654, the Down Syndrome Information Bill, which has just
come to HGO from the Rules Committee.
SB-654, the Down Syndrome Information Bill, would require the Dept. of Health
to provide accurate, up-to-date materials about Down syndrome to patients who
receive a Down syndrome diagnosis (both prenatal and postnatal). This is
extremely important because families across Maryland are consistently
being given outdated materials from the 1970s which use incredibly
offensive language like "mongoloid" and "retard" and which recommend
institutionalization. Additionally, these old materials do not contain
information about local support groups, which are vital connections to help
families on their new journey. I speak from experience, as this happened to
me in a major Montgomery County hospital when my daughter with Down
syndrome was born several years ago. We have countless anecdotes and over
50 written testimonies with similar stories, all across Maryland.
Four other states (including Massachusetts) have already passed this
bill. Accurate, up-to-date materials have already been developed by the national
Down syndrome organizations with the assistance of national medical groups,
and they are available free-of-charge to health care providers
(see www.lettercase.org for an example). However, health care providers are
still choosing to distribute 1970s materials instead of the new ones. This is
absolutely devastating to families receiving a Down syndrome diagnosis.
I have attached a one-pager about the bill. Please contact me with questions or
concerns. We hope we can count on you for your support!
EXAMPLES OF ACTION ALERTS TO DS LISTSERVS AND PARENT GROUPS:
Heather Sachs <heatherbsachs@gmail.com>
Subject: Re: NEED HELP WITH DOWN SYNDROME INFO BILL (SB-654)!
Date: April 1, 2014 9:14:01 PM EDT
To: MDACoalition@yahoogroups.com, dsnmc@yahoogroups.com
***UPDATE!!!! SB-654 CAME OUT OF THE RULES
COMMITTEE LATE TODAY AND
WENT TO HEALTH & GOV'T OPERATIONS!!!***
WE STILL NEED EVERYONE TO CALL/EMAIL
DELEGATES ON HGO TOMORROW
TO ASK THEM TO SUPPORT THE BILL!
The hearing and vote will take place within the next
few days, so
these calls/emails are critical right now.
You can use the same info and talking points below
(just omit the part about requesting it to come out of
Rules).
Also, please be sure to send a thank you note to
Delegate Peter Hammen (Chair of HGO) for getting it
out of Rules, and ask him to support the bill. :-)
WE ARE IN THE HOMESTRETCH, THANKS
EVERYONE!
On Apr 1, 2014, at 4:44 PM, Heather Sachs wrote:
IMMEDIATE CALL TO ACTION ON DOWN SYNDROME
INFORMATION BILL (SB-654)
(this bill would require the Dept. of Health to distribute
accurate, up-to-date information about Down syndrome).
Issue: The Maryland legislative session is nearly over and
although this bill already passed the Senate unanimously, it has
been stuck in the House Rules committee due to political
jockeying.
Legislative Process: The bill must be voted out of the House
Rules Committee. It will then go to the House Health &
Government Operations (HGO) Committee for a hearing. We then
will need to lobby for the bill to be brought to a vote in Committee.
Finally, the bill must be voted on on the House Floor.
HOW YOU CAN HELP!: TODAY (April 1) and TOMORROW,
Tuesday, April 2, we need you to CALL OR EMAIL
DELEGATES on the HGO COMMITTEE and say:
(1) Please have the DELEGATE call CHAIRMAN HAMMEN to
ask the bill go to the HGO Committee for a HEARING and
a VOTE;
(2) PLEASE SUPPORT THE BILL.
This is crunch time and we need as many people to call/email as
possible. These calls should take no more than 1-2 minutes
each. We are asking that everyone call or email ALL of the
delegates from your county AND all of the delegates from
Baltimore (the Baltimore delegates comprise the majority of HGO
so we need to get them all on-board). See below for list of
delegates and contact info.
When you are calling delegates from YOUR county, be sure to
state that you are from their county when you introduce
yourself. When you are calling delegates from Baltimore (and if
you're not a resident of Baltimore), please introduce yourself as a
"member of the Maryland Down Syndrome Advocacy Coalition,
which represents thousands of families across Maryland, including
those from Baltimore." When you are emailing the delegates,
attach the MDAC one-pager (attached to this email) and give a few
sentences with your personal story (e.g., you or people you know
received horribly inaccurate and outdated info on DS, this bill is
necessary to ensure that things change).
____________
Here is a sample script for a call (you can also modify it for
emails):
"Hi, my name is Heather Sachs, and I am a calling on behalf of the
Maryland Down Syndrome Advocacy Coalition, which represents
thousands of families across Maryland, including those in
Baltimore. I am calling to request Delegate XXX's help with SB654, the Down syndrome information bill. This bill would require
the Department of Health to distribute to health care providers
accurate, up-to-date information about Down syndrome to be given
to patients who receive a diagnosis. Although this information has
already been developed by the national Down syndrome groups
with the assistance of national medical groups and is offered free
to health care providers, health care providers across Maryland are
still handing out materials from the 1970s which use offensive
language such as "mongoloid" and discuss
institutionalization. There ARE better materials already available,
they are just not getting to the patients. We want Maryland to join
other states such as Massachusetts in passing this legislation, We
are asking Delegate XXX to contact Chair Hammen to get the bill
out of Rules, to request a hearing before HGO, and then to support
the bill once it comes to HGO."
_________
Please email Heather Sachs (heather@dsnmc.org) if you get
feedback from these delegates, or if you have any
questions. THANK YOU!!!
Heather Sachs, on behalf of the Maryland Down Syndrome
Advocacy Coalition
EXAMPLE OF EMAIL ANNOUNCING THE PASSAGE OF THE BILL:
Dear Down Syndrome Community,
Great news!!! We are pleased to announce that SB-654, the Down
Syndrome Information Bill, passed unanimously in the Maryland State
Legislature last night. This bill will ensure that the MD State Department of
Health (DHMH) will provide accurate, up-to-date, evidence-based
information about Down syndrome to Maryland health care providers, who
will then be authorized to pass this along to patients receiving a Down
syndrome diagnosis.
The receipt of outdated, inaccurate materials about Down syndrome has been a
pervasive problem throughout the state. This will elevate the standard of care in
Maryland as patients who receive a prenatal or postnatal diagnosis of Down
syndrome will have a more accurate, current picture of what to expect with a
child with Down syndrome, and what people with Down syndrome can achieve in
today's society. Patients will also receive information about their local Down
syndrome groups, which will provide them with a vital link to our community and
the support that we have to offer.
Here is the link to the bill:
http://mgaleg.maryland.gov/webmga/frmMain.aspx?pid=billpage&stab=01&id=sb
0654&tab=subject3&ys=2014RS
MANY THANKS TO THE MARYLAND DOWN SYNDROME ADVOCACY
COALITION AND THE MARYLAND CATHOLIC CONFERENCE WHO
WORKED IN PARTNERSHIP FOR THE SUCCESS OF THIS BILL!!
THANK YOU TO THE MANY LEGISLATORS WHO CHAMPIONED THIS ISSUE
FOR US, ESPECIALLY SEN. MAC MIDDLETON, SEN. BRIAN
FELDMAN, DEL. PETE HAMMEN, DEL. JOSELINE PENA-MELNYK, DEL. JIM
HUBBARD, DEL. NIC KIPKE, AND DEL. BOB COSTA. Please send them
thank you emails and post messages of gratitude on their Facebook pages
(email addresses are below). This bill is a wonderful example of bipartisan
support!!
THANK YOU TO THE MANY PEOPLE ACROSS THE STATE WHO
ANSWERED OUR ACTION ALERTS AND MADE CALLS AND SENT EMAILS.
WE COULD NOT HAVE DONE THIS WITHOUT THE SUPPORT OF THE
DOWN SYNDROME COMMUNITY. OUR VOICES WERE HEARD!!!! THIS IS
A SHINING EXAMPLE OF THE POWER OF GRASSROOTS ADVOCACY!
EMAIL ADDRESSES:
Sen. Middleton - thomas.mcclain.middleton@senate.state.md.us
Sen. Feldman - brian.feldman@senate.state.md.us
Del. Hammen - peter.hammen@house.state.md.us
Del. Pena-Melnyk - joseline.pena.melnyk@house.state.md.us
Del. Hubbard - james.hubbard@house.state.md.us
Del. Kipke - nicholaus.kipke@house.state.md.us
Del. Costa - bob.costa@house.state.md.us
Thank you very much!
Heather Sachs
Maryland Down syndrome Advocacy Coalition
Down Syndrome Network of Montgomery County
heather@dsnmc.org