Person Centered Care Services

Person Centered
Care Services.

Redesigning Our Services

We have been living in over 3 decades of person-centeredness, self-determination. Yet, we’ve been oppressed by pre-packaged, one-size fits-all services controlled by non-disabled so-called experts. For years, our supports have been cut, defunded or as the so-called experts say, Transformed. Well, here we are again, faced with more defunding and alarmingly so during a World-Wide Pandemic. In this short-time, these past few months, over 4,000 people with intellectual/developmental disabilities have been infected with Covid 19 and almost 500 people with intellectual/developmental disabilities have died due to Covid 19- and the numbers keep rising. Well, we’ve had Enough! We agree with the so-called experts it is time for transformation, but it is our time, it is time for us, self-advocates, our parents and our support staff to transform and reconfigure the services we need. We know first-hand, we are the Experts, of what supports we need to belong to our communities, to connect and communicate with neighbors, friends and make new ones. We know what supports we need to live, to survive and to exist. It is in this moment we rise up not to Save Our Services but to Design Our Services, the way we see it/live it.

 

 

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#PeopleAtPCCS: Nicole Forgione

“When people think of a disability, people think of it only in one way,” says our Community Living Specialist, Nicole Forgione. The stigma against people with disabilities and what they can accomplish in life leads to a level of uncertainty about services we provide, especially one like ISS: a program that helps people with disabilities find independent living. “They just need someone who believes in them.”

Nicole has been at Person Centered Care Services for six years, running our ISS department, after over fifteen years in the field of disabilities. Coming to our agency was no issue with Nicole; she mentions how she adapted quickly to the idea of person-centered approaches after being person-centered herself. “[In previous jobs], I would ask, why can’t they do X, what if they don’t like Y, how can we do Z, and really help the people we support get to where they need to go?” This practice would help her tailor the ISS department to suit every individual need; no two people are alike and no two apartments are, either, and Nicole pairs a 20 hour Com Hab worker to most cases, finding a good fit to help their goals.

It isn’t always easy: Nicole cites two major hurdles, accessibility to apartments and neighborhoods, and clarity of what the program entails to the greater community at large. Many people have (often negative) preconceived notions on having people with disabilities in their neighborhood, and landlords don’t realize the benefits of having an ISS supported apartment, and the longevity our members have as tenants. This is combined with the obstacles of the current health pandemic, and having to reconsider the needs of their members:  any are just as confused as we are about the rules and restrictions stemming from it.

However, the rewards are innumerable: what keeps her going is seeing people who have lived in nursing homes, have been in homeless shelters, in group homes in which they’ve been told they’ll never live independently. She’s worked with our agency to not only help those who are part of the program, but also spread advocacy efforts to educate people that anyone can do anything, from any point in their lives. Now she has survivors of brain surgery, college graduates, and more, among her ISS roster.

That success drives her to want even more for the department: “I want my legacy to be in this program, to make sure the department is doing it’s best and all it can do to help.”

#PeopleAtPCCS: Doreen Smith

Supporting people with disabilities is something near and dear to so many of the employees in our field, and often it’s a very personal mission to help and advocate for those who need assistance. One of our Employment DSPs, Doreen, took her experience with a disabled child and made it a career.

Doreen has been with us for almost 2 years, though her journey began long before; she had volunteered for Autism Speaks, as well as became a registered Behavior Technician at Proud Moments. Her and 8 fellow moms of people with disabilities came together to create SI Autism Warriors, a non-profit group that funnels donations directly into staging multiple events during the year, welcoming anyone with any disability to attend. This is on top of her side business of making chocolates for the last 15 years!

The source of her inspiration? Her son, who was diagnosed on the Aspergers, on the Autism Spectrum, at the age of 3. Her and her husband stood together to help afford their son any and all possibilities, while their family stepped away from them out of fear and embarrassment. They haven’t spoken since.

Doreen doesn’t let it bother her, though. “It’s their loss,” she says, proud of who her son is. He is 17 now, playing ice hockey since he was 5, and attends a culinary program at Tottenville High School. Doreen has been supportive of her son doing anything he puts his mind to, and never limits him. Their strength carries both ways; she remembers crying when she had to discuss the differences between him and neurotypical children, and he replied, “But autism makes me who I am.”

Coming originally from a background in Wall Street (“I hated it after a few years”), her career path and passion for advocacy and support brought her down the aforementioned positions to find an ad with an agency called Person Centered Care Services. Doreen took a position with Com Hab, which she loved, and later made the transition to Career Supports, where she helps a variety of young people get prepared for the job market. She loves the creativity involved, and the times where she makes a real impact: she remembers fondly seeing a person she supports dapper and dressed to the nines, prepped and ready for his job interview. “Now I have a reason for getting up every day.”

Where does she want to go from here? She’s becoming more involved in our outreach team, joining the Gala committee to help make this year’s the best yet. And work itself? “I told [my boss], I’ll drag myself on my hands and knees if I have to; I love it here.”

 

Do you have a child, relative, or someone you know with a disability who needs help entering the job market? Find out more in our Career Supports department. Want to make an impact in the disability field? Apply for a position in our agency, or join our Disability Ally Initiative!

Black History Month and the Disability Field

Black History Month may be over, but the legacy of black men and women lives on every day of every month. While we admire the impact that black people have had on our history and culture, we often struggle to see people with disabilities in the same light, when the two may be more closely related that we realize.  Honoring black history includes honoring black disabled individuals and their contributions from decades gone to present day.

Harriet Tubman, for example, is often a quickly cited icon of black history, but isn’t often recognized as a woman who struggled with epilepsy after being injured by a slave owner. This caused seizures, headaches, and visions, as she continued to help slaves escape safely in the Underground Railroad.

Fannie Lou Hamer was a civil rights activist who helped the movement allowing African-Americans to register to vote, as well as co-founding the Mississippi Freedom Democratic Party. She also suffered from polio as a child, and later in life, suffered from kidney damage and a limp when she was beaten in a Mississippi jailhouse.

Maya Angelou is renown for her powerful writing, penning such classics as I Know Why The Caged Bird Sings, and was an unfortunate victim of sexual assault and abuse. This series of circumstances led to an anxiety disorder known as Selective Mutism, in which she didn’t communicate with words for five years.

Johnnie Lacy was part of the independent living movement and fought for the rights of people with disabilities, especially those of color. She herself had an ambulatory disability, utilizing a wheelchair as she advocated for the needs of both black and disabled people.

Halle Berry suffers from hearing loss.

Simone Biles was diagnosed with Attention Deficit Hyperactivity Disorder.

Muhammad Ali, Whoopi Goldberg, and Daymond John of Shark Tank and clothing label Fubu, among others, all suffer from dyslexia.

This is a small sample of the 5.6+ million African Americans living with a disability in America, 3.4 mil of which are working-age. To note, only 28.7% of working-age African Americans with disabilities are employed in the US. This is in line with other statistics that show that 1 in 5 Americans have a disability and only 30% of those who are working-age are employed, despite wanting and being capable of working.

Clearly, the ability isn’t what’s lacking, it’s a systemic problem that requires a variety of solutions to allow people with disabilities to empower themselves and make the same impact these strong, powerful people have. When we remember black history, both in February and every day, it’s important for us to be aware of those with disabilities who also weaved the inspiring narrative we follow today. Awareness of these stories help us lead our community to respect and inclusion in an age where divisive lines are more blurred than ever.

You can help us continue to educate, advocate, and inspire others to our mission of inclusion by joining our Disability Ally Initiative! Find out more information here.

Mental Health Awareness

Here at PCCS, we’re celebrating a month close to our hearts: May is Mental Health Awareness Month! While it’s easy to overlook on the calendar, 1 in 5 American adults struggle with some sort of mental health issue, and it is often overlooked.

What does a “mental health issue” even mean? Often, we neglect issues with self-confidence, depression, anxiety, and more in order to function in modern society, hiding them in a way that we don’t with physical ailments. When we look at the data, though, it turns out these feelings are more common than we think, and are often associated with “normalized” feelings of being overworked, overtired, burnout, and social fatigue.

There is a growing understanding that we need to address mental health issues in a variety of ways. Self-care is a rising trend in America, refocusing our collective efforts in “filling our cups” first, so we can “fill someone else’s.” There is a call for more services for people with significant mental health issues, and support for systems that can enable positive results. There is a dialogue about our feelings building from this growing movement, opening up the avenue for change.

While we continue to support the awareness of the realities many people face, we love to bring about change in fun and meaningful ways! We’ve partnered with the New York Red Bulls on June 1st as a Mental Health Awareness Night! We’ll be watching them take on the Real Salt Lake, while raising awareness to the cause. It’s a great way to show support, have a great time, and you can now take 20% off of ticket sales! We hope to see you there and continue the fight for awareness and acceptance!

Disability Pride Parade: A Recap

“Unless someone like you cares a whole awful lot, nothing is going to get better.”

We were more than excited to join hundreds of other New Yorkers at this year’s Disability Pride parade advocating for inclusion, acceptance of human diversity, and promoting visibility of people with disabilities. Our staff members and people we serve were front and center, rallying hand in hand showing that together we can accomplish so much more than we could ever imagine.

Events like this is where allyship and advocacy begins, and we are always thrilled to be present in the community, bringing attention to the issues that need solutions and making connections with people who want to be a part of the work we do on behalf of those we serve.

Missed the event but want to learn how you and/or your employer can become an ally to people with disabilities? Visit our Disability Ally Initiative page to learn more. 

 

Advocacy Done Wrong

Autism Isn’t As Silent As You May Think

Always Unique, Totally Intelligent, Sometimes Mysterious is a common acronym of the Autism Speaks awareness campaign, but it’s superficial at best.

You might be asking yourself “Why? Isn’t it true?” It’s superficial because it was invented by parents, not Autistic people.

Autism Spectrum Disorder is defined by the Merriam-Webster Dictionary as ‘of a group developmental disorders (such as autism and Asperger’s syndrome) marked by impairments in the ability to communicate and interact socially and by the presence of repetitive behaviors or restricted interests’.

Today’s society seems to bear two definitions of the communicative disorder—the immature Internet meaning that relates it to “stupidity” and the sympathetic definition of “Oh, your child has Autism; let’s put him/her in special education.”

I’m here to debunk both. The first definition is just plain un-informed. Nearly everywhere on social media someone has a picture of themselves they don’t like. The caption to that photo—”I look Austistic”. Don’t assume Autistic people are unintelligent because many cannot speak—In fact, some have even graduated high school. Take a look at Nicholas D’Amora, 20, of Staten Island. He does not communicate with words, but according to his mother Barbara Pandolfi he will be a high school graduate by the end of June 2018.

“He knows he’s different, but that doesn’t stop him from challenging what society throws at him”, said Pandolfi.

I could go on endlessly about cases very similar to D’Amora’s, but just because he will be a high school graduate, doesn’t change the fact that he was in special education for most of his life.

Society seems to see Autistic people the same way it sees a fine China cabinet—Fragile, dependent on somebody else, and helpless if they fall.

Autism awareness campaigns are run by parents of Autistic people and their doctors, it seems, and they think they know exactly how their child is feeling, but they don’t.

Imagine there was a protest for LGBTQ+ rights, but a straight person was in charge of it. People of that community wouldn’t approve of someone advocating for them that doesn’t experience what they do, would they? Probably not. So why should Autism campaigns be run by non-Autistic people?

Bottom line—If Autistic kids are going to live somewhat-normal lives, why not let them interact with normal children in general education?

I kept ranting about Autistic people running their own awareness campaigns, and you might be wondering two things at this point—What Autistic person is capable of running an awareness campaign, and who am I to have even written this article; R.J. Calamito, you aren’t Autistic.

The answer to both questions is the same—Like I said before, don’t assume what you don’t know.

My name is Raymond Joseph Calamito, and I am diagnosed with Autism Spectrum Disorder.

In other words—Yes, R.J. Calamito is Autistic after all.


R.J. Calamito is a contributing writer at Person Centered Care Services and a Junior Editor at The John Jay Sentinel