Take Action Now

A Call for Unified Advocacy 

A Message from New Jersey ARC Executive Director Tom Baffuto
Dear Families,

          At The Arc of New Jersey, we are grateful to have you in our corner and we know and appreciate the tremendous commitment you make when you join our grassroots team. You are not only advocates for your own child or loved one; you are advocates for the system as a whole - working toward improvements for the entire developmental disability community. It is our collective voice that creates change and I write to you today because we need you now more than ever.
          Unfortunately, we are in the midst of two very big battles and the stakes are very high. The first is our ongoing fight on the State level to increase wages for our direct support professionals. This is an issue the affects you and your loved one on a day to day to basis. You feel it when you encounter high-turnover rates at the programs your loved one attends or when your self-direct services wages are so low you can't find someone to hire. You feel it when a beloved long-time staff member leaves for a higher paying job. You feel it and so does your loved one. As the Chair of the DSP Coalition for a Living Wage, we are fighting to increase salaries for our DSPs so that we have a strong and dependable workforce to deliver the services you and your loved one depend on.
          We are also pushing back with all our power against proposed changes to Medicaid on the Federal level that will reduce the quality and availability of long term supports and services. Included in the repeal of the Affordable Care Act (AKA ObamaCare), are cuts that would decimate Medicaid as we know it. The language would fundamentally alter the fabric of the program, and the supports and services that people with I/DD require to live in the community would be in jeopardy. It would be a major step backward for those we care about it and should it pass, it would be near impossible to undo.
          These are uncertain times and the lives of people with I/DD hang in the balance. We need you to stand strong with us. We will be calling on you more and more in the coming weeks but please know we don't take your help for granted. We are all in this together. These are critical times, but I am confident that with your backing we can tackle what lies ahead.

Thank you for all your support.
Tom Baffuto
Executive Director

For more information about the Coalition for a DSP Living Wage, see these documents:
One Page Fact Sheet about the Coalition for DSP Living Wage
Easy Sign-on Form for the Coalition

Ask yourself.....

     What if I was dependent on someone else to care for                    me and support me through each and every                                  day........and there was no one there?

             What if my ability to navigate the world was                                    limited......and there was no one to help?

                   What if through no fault of my own my lifelong
                                   survival was in the hands of a series                                                     of strangers?

How scared would you be?

I've been looking for six months
....I still can't find somebody
.....That frustrates me more than anything,  I have the funding, but I don't have the people.
 You can't just throw money at this problem .....if you don't have the workforce behind it to fill it.
                                                                                  S,  Mom

Individuals with developmental disabilities rely everyday on Direct Support Workers to provide the assistance they need. Whether that assistance takes place in a day program or employment situation, a group home, a family home, or their own home, it is the most important factor in their lives.  Direct Support Workers are the people who put food in their mouths, interpret often atypical communication, and facilitate interaction in their communities as well as guarantee their health and safety.  

Trained, accessible Direct Support Workers assure the dignity, quality of life, and survival of individuals with developmental disabilties.

At some point in their children's lives, family caregivers can no longer be the primary caregivers for their children with developmental disabilities.  Whether parents are caring for adults with significant needs or adults with minimal needs for support, the day will come when they cannot be the loving hands and kind voices there for them no matter what.   The wear and tear of years of physical care, dealing with intense behavioral issues, and their own health and aging issues demand that families make plans to meet the lifelong needs of their children.

Skilled, compassionate Direct Support Workers allow families to trust that their loved ones could survive in this world without them.

The Direct Support Workforce is currently in crisis.  A workforce adequate in capacity and skill to meet the needs of an increasingly diverse and complex population does not exist.  Record vacancy and turnover is threatenting the health and safety of individuals with developmental disabilities.

For DETAILS about the crisis, click here.
To explore SOLUTIONS, click here.
For information on how YOU CAN HELP, click here.

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From  J,  Mom of two sons with severe autism

“Agencies haven’t been able to help.  I went through three agencies....nobody.  I told them I’d take any hours they could give me, even in the middle of the night.  S doesn’t sleep anyway.  And still they couldn’t find anyone.”  They have funding for respite services but the provider has not been able to find anyone to cover the hours.  "They looked for years.  It took half a year (with another provider) and they found someone.  But the person could only come on Sundays.  We took it....because that’s what you have to do, settle.  Hopefully, eventually they’ll find someone.  But it’s been years.”  

From C, sibling of a gentleman with Downs Syndrome
C's brother has enough funding to cover aides, but she says that consistency, communication, and reliability are a problem.  Reliability caused the family to have to let someone go and it took four months to find someone new.   “I can’t tell you how many times someone comes for an interview....we’d meet with them...explain what they have to do...but every single time within 24 hours we’d get a message...they have car trouble, they’re moving to Portugal... really? 

From G. Mom of a young woman with severe, multiple disabilities
“In the last three years we’ve only had four people apply to fill a vacant position.  One quit after one day.  She said it was too much for her.....after one day?  I've been doing this for thirty years.  Another didn’t show for her first shift and wouldn’t answer phone calls.  Another quit before her first shift. And, the last didn’t show for the interview.  The person that they were replacing quit by text with twelve hours notice after calling out repeatedly in prior weeks.  We’ve contacted four providers to ask for them to help us with staffing.  Two couldn’t find anyone and the other two wouldn’t work with us because they are having trouble finding staff for their own programs.”



Families speak:

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