Dear MDSC Member,    

 

We have a lot of exciting public policy news to report relating to initiatives not only here in Massachusetts, but on the federal and even the international stage. 

 

As you will read below, following in the wake of the passage of the

Director's Message

historic Prenatal Down Syndrome Testing Bill, we received more good news from the Mass. State House this week. For the first time in our 29-year-history, we will be the recipient of critical state funds to support our essential programs, including our signature Parent's First Call program. 

 

And yet, despite these recent victories on the state level, we are not ready to rest on our laurels. With just two weeks in the Mass. Legislature's session before recessing for the summer, we are pushing hard for (and need your help with) the "Real Lives Bill", a major piece of legislation that is on our platform. 

 

On a national level, the MDSC is working diligently to pass the signature bill on our national platform, the Achieving a Better Life Experience (ABLE) Act. Read below about our efforts to reach out to both major parties on this legislation.  

 

Finally, the MDSC is stepping out well beyond our state borders in asking the U.S. to ratify an international treaty, the Convention on the Rights of Persons with Disabilities. The CRPD is similar to the ADA and has been ratified by 114 other countries. 

 

I hope you enjoy reading about all these exciting public policy initiatives. 

"Real Lives" Bill Has a Real Chance

 

See this "Chronicle" segment about what self-determination means in practice for one individual and how he is fighting at the State House to make sure others have the same opportunities he does.

 

With just two weeks in the Mass. Legislature's session before recessing for the summer, a major piece of legislation on our platform still has a chance to pass. But we need your help

 

The Real Lives Bill will do exactly what it's title hints at -- It will help improve the real lives of real people with disabilities in very real ways. After decades of no cost of living increases for services and cost pressures on service providers, individuals with disabilities and family caregivers have been left without the critical supports they need to function successfully in their daily lives.

 

In tough times like this, under the state's existing service delivery model, consumer choice has suffered greatly, even though lack of choice is antithetical to the self-determination movement. Given the importance of housing and employment in the lives of people with disabilities, it is essential, especially in tough times, that we implement the necessary safeguards so that some level of consumer choice remains in tact. 

 

The Real Lives Bill, sponsored by Rep. Tom Sannicandro, will do just that, changing the way developmental services are financed and delivered for the tens of thousands of people with disabilities in the Commonwealth who receive state services. Under Real Lives, which you can see here in its entiretyindividuals will be able to determine how to spend their allocated dollars on the services and supports they need, not the ones dictated to them by the state. 

TAKE ACTION NOW

 

Take Action here, through our partner The Arc of Massachusetts, to ask your representative and senator to sign a letter of support to the House Speaker and Senate President urging passage.You can see the list of legislators already signed on here, and a Real Lives Bill Fact Sheet herePlease take this quick action to help make the Real Lives Bill a real law.  

For First Time, MDSC to Receive State Funding

 

In this segment, "Chronicle" looks at some of the work of the MDSC, which will now be funded in part by the state.

Your phone calls and emails in support of including funding for MDSC programs in the state budget have paid off! 

 

We learned early this week that despite many ups and downs on the way to Governor Patrick's desk, we overcame the final hurdle when that line-item was NOT among those vetoed by the Governor. This means that for the first time in the MDSC's 29-year-history, we will be the recipient of critical state funds to support our essential programs, including our signature Parent's First Call program.

 

We want to thank again those of you and those in the State House who helped overcome numerous obstacles to make this come to fruition: This includes Senate and House Conference Committee members, in particular Senate Chairman Stephen Brewer and Vice Chair Jennifer Flanagan, Senate President Therese Murray, Speaker of the House Robert DeLeo, House Ways & Means Chair Brian Dempsey, Sen. Katherine Clark and State Rep. Tom Sannicandro. 

MDSC Outreaches to National Leaders on ABLE

  

 

 

At the MDSC, we are doing everything in our power to support the national campaign to pass the ABLE Act. The legislation, which will allow people with disabilities to maintain greater control of their savings, currently has 166 cosponsors in the House and 22 in the Senate. (You can see a Fact Sheet here)

 

Among the signatories are 11 of Massachusetts' 12-member Congressional delegation. Next week, I will be meeting with Lauren D. Bazel, the tax policy advisor for Sen. John Kerry, the sole holdout. Sen. Kerry is a past supporter of the legislation and a member of our Honorary Board, so I look forward to finding out what, if any, are his reservations. As I do that, I would appreciate it if you would call Sen. Kerry's office at (202) 224-2742 and ask him to support the bill. You can see a sample script from our national partner NDSS hereThen, let me know what his office says!  

 

Also regarding the ABLE Act, the MDSC and our partners at NDSS met in Boston this week with the staff of presidential candidate and former Mass. Governor Mitt Romney in the event he wins the presidency in November. 

  

NDSS President Jon Colman, NDSS Vice President of Advocacy & Affiliate Relations Sara Weir, MDSC Advocacy Specialist John Anton and I met with Domestic Policy Advisor Anna Gatlin on Wednesday in Mr. Romney's campaign headquarters in Boston. My colleagues and I discussed the importance of the ABLE Act and the significant impact it can have on people with disabilities and their families across America.

  

We appreciate the willingness of Gov. Romney's team to take the time to listen, and we are hopeful that whoever is in the White House will work in partnership with the Down syndrome community to ensure that people with Down syndrome have the opportunities and resources they need to lead full and productive lives.

MDSC Urges U.S. to Sign International Treaty

 

On Thursday, the MDSC signed on to a petition asking the Senate to support U.S. ratification of the Convention on the Rights of Persons with Disabilities. That same day, the U.S. Senate Foreign Relations Committee held a hearing on the international treaty.

 

Similar to the Americans with Disabilities Act (ADA), the principles of the CRPD include equality, non-discrimination, inclusion in society, accessibility, and respect for inherent dignity. Ratification of CRPD will allow the U.S. to continue in our global leadership on disability rights.

 

One hundred and fourteen nations have ratified the CRPD, including important allies of the U.S. The treaty reflects core American values such as the dignity of the individual, access to justice, respect for the home and family, and the right to education. The CRPD is consistent with not only the ADA, but also with the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act of 1973, and numerous other U.S. laws. 

 

CRPD seeks to ensure that countries across the globe provide people with disabilities the same rights as everyone else in order to live full, satisfying and productive lives. To this end, the CRPD will create greater access for Americans serving, working, traveling, and studying abroad.

 

See here for complete information on the Convention

In Closing

 

We couldn't be happier that the MDSC is able to represent the public policy interests of the Down syndrome community and the broader disability community on so many levels.

 

And it goes without saying that we couldn't do this work without your steadfast support, advocacy and love for people with Down syndrome. Thank you!

 

Sincerely, 

 

 

 

 

 

Maureen Gallagher, Executive Director 
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