The Arc of Delaware County staff, both executive and programmatic, and self-advocates met with Congressman Marc Molinaro to tour the main headquarters in Hamden, and discuss concerns and daily struggles faced by those with disabilities.


This article was reprinted with permission from The Reporter.    The Reporter


HAMDEN – To help address barriers and hardships faced by those with disabilities, Congressman Marc Molinaro, representing New York’s 19th Congressional District which includes Delaware County, visited The Arc of Delaware County Thursday, Aug. 17.


After a tour around the facility where Molinaro met with clients as they engaged in day programs, he sat down with self advocates to discuss national issues that hinder them personally on a daily basis.


Molinaro expressed his appreciation for the self advocates.


“Most of the time the people who advocate to me are people paid to advocate as lobbyists, and that’s really great,” Molinario said, “I just want to tell you that I so much appreciate being around folks who live what they preach and know from walking in the shoes.”


As a father of a daughter born with developmental and intellectual disabilities, Molinaro said advocating for those with disabilities and those living with mental health issues are his two most important objectives in office.


“My promise to you is it is my primary focus,” Molinaro said.


To Molinaro, his priority of advocating for those with disabilities to live a fulfilled life is more than a “cute passion,” he said, and felt any suggestion otherwise insinuated people with disabilities don’t deserve to have a representative whose primary focus it is to ensure the government protects their rights to “life, liberty, and a fulfilled life.”


The Arc of Delaware County Chief Executive Officer Molly Little said the organization’s mission is to help people live a personally fulfilled life.


Clinical Coordinator Joe Greene said people the Arc supports rely on Medicaid and Home and Community-Based Services (HCBS), which are services people with disabilities receive so they can live fulfilling and meaningful lives. “But because Medicaid must fund institutions while home and community based services are optional, states do not have the funding to support both,” Greene said. “That means people in need of critical support are stuck on waiting lists while receiving no or very limited services.”


Self-Advocacy President Chris Morris said due to a lack of staffing, people aren’t able to go and live the lives they would like to. Often, people are stuck at home or made to go places together, he said.


“We miss out on living lives we want to live and being able to do the things we want to do. We have good staff, high quality staff at that, but it’s hard for them to stay when they have to work all the time but don’t get paid enough money and everyone suffers,” Morris said.


Direct Support Professional Jessica Baldi said when she was faced with a tragic situation and left to make the decision of continuing to work or receiving public assistance, she chose to continue working because she loved her job, “but the balance was cents apart.”


“It’s like salt in the wound when we go through the interview process, we find somebody good, but Taco Bell will hire you for more.”


The federal government does not limit the state in what they’re able to reimburse in salaries to direct support professionals, Molinaro said. States are given the authority to decide how to reimburse using federally issued dollars, he said.


“My point of saying that is there’s not a lack of money when it comes to direct support rates. There’s a lack of willingness from the state to absorb the additional costs,” Molinaro said.


Molinaro said he intendeds to look into what’s out there as far as language to expand access to funding on HCBS.


Another issue highlighted by self-advocacy group members was Supplemental Security Income (SSI) restrictions and penalties, which group members claimed penalize those with disabilities for saving money, getting married, or working – by reducing their SSI benefits.


Jennifer Gugliotti said she finally accomplished a long-time goal to work at a daycare, but once she got her job, she lost her health insurance.  “I finally wanted to work. I wanted to work so hard. But then I lost the medical benefits, even though I wasn’t making very much money.”


Molinaro said he believed he sponsored the SSI Savings Penalty Elimination Act, which will increase the amount of money people with disabilities can have at one time for the first time in over 30 years. Currently, the cap is set at $2,000.


“Why is there a limit at all?” Morris asked; “Why is it okay for someone to tell me how much money I’m allowed to save? Why do people with disabilities lose their benefits if they get married? Disability rights are human rights. So what are you going to do to improve Social Security benefits for people with disabilities?”


Molinaro explained the need for a cap is to ensure taxpayer dollars aren’t being paid in benefits to those with $500,000 saved in the bank, “but clearly your ability to save more and not be penalized for marriage is appropriate.”


Finally, self advocate Erin Balcom who was born with spina bifida and uses a wheelchair, said many places in the village of Delhi are not accessible.


“What can we do to change that?”


Many of those places may need to meet ADA (Americans with Disabilities Act) requirements, and the municipality is not enforcing it, Molinaro suggested.


“And so for us, asking that question will be the first place we start. What understanding does the municipality, the government, have about ADA compliance, and are they working to make sure those requirements are met?”


“Number two is we want to work with the business community to expand that thing I call ‘Think Differently’,” Molinaro said, “To educate businesses not only of the need to meet the minimum standard of ADA, but also the benefits of going beyond that, because they’ll open the doors to whole clientele customers like you that can’t spend your money there.”


Before the end of the year, Molinaro said he intended to host a “Think Differently” summit with all town, village, and city elected officials in his congressional district and explain the benefits of “thinking differently,” he said, and one of the topic areas is accessibility.


Molinaro suggested Arc staff and self-advocacy group members host the Chamber of Commerce during a community outreach event, and speak with businesses face-to-face about their concerns. “One of the most motivating factors to change is money,” Molinaro said, “Sometimes saying ‘I’m not going to shop there if you don’t address some of these concerns’ is a way of doing it.”


Molinaro also suggested speaking directly to the county board of supervisors or at a committee meeting.