Governor Baker has signed the bill known as Nicky’s Law. Families may now look to a future where caretakers hired by the DDS and who have abused adults with disabilities will be prevented from further employment in that system.
     Here’s how. Nicky’s Law authorizes a registry to hold the names of employees who have committed acts of substantiated abuse which have resulted in serious physical injury or serious emotional injury for adults served by the Department of Developmental Services. DDS funded providers would not be able to hire someone on that registry.
     Thankfully this long-awaited law finally made its way through the legislative process. Too many families have been hurt, with some people with disabilities permanently injured, or sadly even died from their injuries.
     We thank all of the courageous parents, advocates and legislators that never gave up pushing for Nicky’s Law despite the myriad of obstacles placed in their way.
     To read more about Nicky’s Law, please visit the Arc of Massachusetts’ Nicky’s Law page https://thearcofmass.org/abuseregistry
     The registry itself will be housed at the Disabled Persons Protection Commission (DPPC) 
www.mass.gov/orgs/disabled-persons-protection-commission
     We hope this law now encourages families to report first sign of any suspected abuse of their family member or friend. If you do, immediately begin the phone calls and outreach to the highest levels to report and flag the individuals. Because your loved one doesn’t deserve abuse – ever.
Sharon Marie
February 2020

The Abuse Registry Bill Nicky’s Law, “An act to protect individuals with intellectual and developmental disabilities from abuse”, was voted for approval by The Massachusetts House of  Representatives on January 15th, 2020,
  The bill authorizes a registry to hold the names of employees who have committed acts of substantiated abuse which have resulted in serious physical injury or serious emotional injury for adults served by the Department of Developmental Services. The registry will be housed at the Disabled Persons Protection Commission (DPPC).
The bill now must go back to the Senate so it will get to the Governor and be signed into law.
To read the latest about Nicky’s Law the heroes that have pushed for it, and their stories, visit the Arc of Massachusetts Nicky’s Law page https://thearcofmass.org/post/breaking-nickys-law.

I’m going to quote Cheryl Ryan Chan, the force behind the push for Nicky’s  Law… “The phone lines are open at the Statehouse. Call your Representative! Here’s a script: “Good morning, my name is < > and I live in < town>. I’m calling to ask Representative < > to contact the Members of the House Ways and Means Committee and urge them to push Nicky’s Law, House Bill 4074, through quickly; AND I’m asking the Representative to vote yes on this bill when it gets to the floor for vote.”
  You can continue if you want, with your own story and/or a further appeal about why this is so important.
  You are also welcome to email your Representative. To find out who yours is, go to: https://malegislature.gov/search/findmylegislator
  One last thing – try to reach out to your Senator and send them a quick message of thanks for voting yes to Nickys Law last week!
 Thank you everyone! #nickyslaw”
Here is the link to the Nicky’s Law Facebook Page www.facebook.com/groups/284125382009278/
And thank you Cheryl Ryan Chan, for never giving up!
Sharon Marie

As of November 13th, 2017, the proposed “Nicky’s Law” is in the Senate Ways and Means https://malegislature.gov/Bills/190/S2213. According the State of Massachusetts, the duties of this committee are to “consider all matters relating to the finances of the Commonwealth and such other matters as may be referred thereto.” So another positive step forward in creating a system to protecting people with disabilities from being abused and/or keeping track of known abusers and prevention of further harm. Below is the original info from my previous blog that explained how this proposed law came to fruition…

There is a proposed new law in Massachusetts to protect people with disabilities from abusive caregivers being employed by the DDS (Department of Developmental Services). It was initiated by a parent whose child was directly impacted by such a situation.

According the Arc of Massachusetts’ website, the proposed Nicky’s Law “will create an abuse registry which will protect the safety and dignity of people with disabilities. Persons substantiated of abuse or neglect of an individual with autism or other intellectual or developmental disabilities will be listed on this registry and this will prevent re-hiring.

The bill was filed by Senator Mike Moore and Representative Linda Dean Campbell, the bill numbers are S 64 H 80.
Nicky’s Law will require all provider agencies to check the registry through inquiry before hiring a new employee. The Arc has worked closely with the appropriate agencies and stakeholders, including Nicky’s family. We are grateful to Nicky’s family for coming forward to initiate this bill and for their long time contribution to this effort.

Please help us advocate for this important legislation – our goal is the pass this bill during this legislative session!
Contact Maura Sullivan, Dir. of Gov. Affairs at The Arc of Mass for information on how to get behind this initiative. sullivan@arcmass.org.”

Here is the direct link from the Arc
http://cqrcengage.com/thearcma/app/write-a-letter?1&engagementId=338993.
There is also a Facebook Group devoted to supporting this proposed law.

For those of us with vulnerable loved ones who have a disability, this will be a valuable law to protect those who cannot protect themselves.
Sharon Marie

I’d like to thank our legislators for unfreezing the disability budgets, allowing families to plan supports for their loved ones. However... the glowing scenarios touted for the transitioning of people with disabilities from institutional to lower costing community settings now have a bait and switch feel to them.
   The allure that the monies saved by using home settings could benefit and be directed into the Adult Foster Care models, projected a community-friendly support that worked for all.
  But with the state’s 2017 budget cut of millions of dollars from Adult Foster Care, the disability community once again seems to be getting the sucker end of the deal.
  According the Association of Developmental Disability providers, AFC’s cost effectiveness has saved Massachusetts taxpayers millions of dollars, and that between 2000 and 2015, the amount of money MassHealth paid for nursing facility patient days fell by 37 percent. Clearly the disability community has kept up their end by building AFC communities and working with the cost cutting.
So my on my “holiday wish list” is a request to the State of Massachusetts to keep up their end of disability support by restoring the budget cuts. Put the monies back into AFC and related programs, and stop playing bait and switch with constituents.
 Sharon Marie

Our family has the bad timing of having a child transitioning to adult services during this current budget freeze. So even though we have a letter of acceptance and commitment from the DDS for services starting at age 22, we have now been told that the state has “level funded” programs until the budgets are settled.

Meaning no money for previously committed adult services.

Governor Baker, do you know what this freeze means to the thousands of families or support professionals who have worked for months or even years in planning life and work for a person with a disability?
It means some people now do not have a place to live. At all.

It means that some people will now have no job and support programs. And if they do happen to find one, they have no ride to get there.

It means that other members of the family, working tax payers, will have to stay home to monitor the disabled family member. Or carve yet more time from their jobs to implore community groups to help find something, anything, to keep their loved one an engaged and contributing member to society. And safe.

And I ask you Governor Baker, how do you take away commitments already made to a disability community?

Governor Baker, keep your commitment to families and unfreeze the budget.
Sharon Marie

Aren’t you sick of the same old emojis that just don’t reflect your real-life family members?
It turns out that a London-based disability advocacy group called Scope feels the same way. So much so, that they have created a new series of emojis that portray people with various abilities.
These include people using wheelchairs,  prostheses, guide dogs, hearing aids and more in action poses. So instead of just passively observing, they are lifting weights, whacking tennis balls, slapping each other five, and much more. Like everyone else.
You can read more about the innovative thinkers at Scope at Disability Scoops recent article highlighting this idea.
Sharon Marie

Budget cuts.
That’s all we seem to hear about in the disability community these days. You’ve probably received emails from many of our disability support organizations urging you to email, call or write our legislators. Some of them even have the forms on line ready to be filled out and delivered.
We all need to stand behind their continuing efforts, fill out those email forms as soon as we see them in our inbox.
So if you receive ten different requests, fill and send each and every one of them.
Yes, we are all very busy and these things take time. But we will be even busier looking for more supports or money to pay for the supports if funding to important programs is reduced or eliminated.
They are fighting for us and our family members. Now is our time to show we appreciate these disability warriors’ hard-won battles.

Sharon Marie

We’ve grown!

Welcome to our new site. For the past 5 years, countless caregivers and families have told us how attending an event or program they learned about here has made an impact on their special child’s life.

This has inspired us to do more. So we’ve moved to a new web platform and improved the overall look and options, [Read more…]

The Massachusetts DOE’s website has a page called “Program Quality Assurance Services.”
  This lists which public school districts are up for review to see who is or is not in compliance with education requirements – including Special Education laws.
For example, in 2015 a few of the school districts up for review include:
•  Attleboro
•  Boston
•  Everett
•  Mansfield
•  Taunton
•  West Springfield  
Find out when your school district was reviewed, or when their next scheduled review will take place, on the DOE’s Coordinate Program Review Page at http://www.doe.mass.edu/psm/
I hope this page is a useful tool to help ensure that your child is receiving the best special education supports available in your school district.

Sharon Marie
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It’s hard to get out of beach and pool mode. But summer is almost over and it’s time to embrace another school and work year.

There is always lots of commotion with moving forward to this next stage of the season; IEPS, medical forms, becoming familiar with the new aides for our child, and organizing the other kids’ schedules around our special child’s particular needs.

The good news is that once everyone is settled in, we can enjoy the organization and quiet moments that come when all the planning is finally working.  And then it will be time to make our holiday lists…

Have a great school year!

Sharon Marie

The case of Justina Pelletier is the nightmare that any special-needs parent fears. Justina is the 15-year-old from West Hartford, Connecticut that is being held against her family’s wishes at a Boston hospital since February 2014.

There is way more to the story than can be related in this short blog. However if you visit Justice for Justina  you will see her parents side of the issue and case for bringing her home. A more newsworthy view can be found by just searching Justina’s name in the internet.

No matter how you find information, it is important that as a parent you educate yourself on what a worst case scenario can look like when parents and doctors disagree.

I hope that Justina goes home to her family soon. And I hope this never happens again.

Sharon Marie 

“Mom, where I am I going next?”
For most teens, an answer from a parent may be “to your room to finish your homework”, or “stop texting your friends and I’ll tell you.”’

However this question came from my special-needs 19-year-son. He wondered what his disability supports will be when he graduates from his out-of-district school.

I don’t know.

The DDS says no even though he was in their system since age 3, supported by diagnostic reports taller and thicker than Manhattan phone books.   The DMH says no, even though those same reports document that his OCD, ADHD, anxiety, and other co-morbid issues must be addressed by a comprehensive mental health support system.

Seems they think that the DDS should take him. Or I should look elsewhere.  And when I explore other disability organizations, they usually won’t accept someone not funded by the DDS or DMH.

No wonder so many people fall through the cracks in our system.   For any state agency legislator that may happen to read this blog, please tell me how these roadblocks are supposed to help the very people you are designated to serve?

My young adult, and many other young adults need your help. Today.

Sharon Marie 
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