Dear Members, Families, and Friends,

Welcome to the Summer Issue of The Connection newsletter. In this edition, we bring you the latest news from around Southern Tier Connect and include important information about member health and support, where to find support when you need it, and more! The latest Your Rights in 10 offers valuable insight to empower you, while the In Case You Missed It section at the bottom of this newsletter includes a few key items you may have missed, including the latest webinars.

We wish Southern Tier Connect members, colleagues, and partners, as well as our family and friends, a rejuvenating start to the summer season. As always, we hope you find this newsletter insightful and informative.

Sincerely,

Jess and Carey

Above: Joanna in front of Southern Tier Connect, Oneonta office.

Care Coordination Manager (CCM) Joanna Jackson has been working with Southern Tier Connect for three years and is a pro when it comes to providing families with the care they need. Joanna has worked in the human services field for over ten years and expressed her gratitude for all the families she’s met and for whom she’s had the opportunity to provide care and support when we talked to her recently. Before working at Southern Tier Connect (STC), Joanna worked at Springbrook as a direct support professional (DSP) in a residence at The School at Springbrook; she has also worked in the foster care system. Joanna has worked with over 30 families at STC, but few have stood out more than Taylor Piucci and her family. In the three years she’s been working with Taylor and her family, Taylor was one of the first STC members on Joanna’s caseload, and so much has changed for them at that time. Joanna has been there to support them through every trial and triumph.

Above: Joanna taking a selfie with Taylor

The Piucci family purchased their home in Stamford, New York, over seven years ago. They have since made frequent trips to Albany Medical Center and Memorial Sloan Kettering Cancer Center (MSK) in New York City to support Taylor’s diagnosis and treatment. At MSK, Taylor has a doctor who is working with her through all of her treatment and has a holistic understanding of Taylor’s primary needs and wants as a young girl with autism. As a CCM, it became Joanna’s job to help the family secure transportation, temporary housing, and additional items and food for their weekly trips to New York City for Taylor’s chemotherapy. 

Click here to read the full story on our website. 

Reminder: You must have a current CAS/CANS!

If you or your loved one is looking to update any OPWDD services (addition of service, increase in hours, residential placement, family support services, etc.), the first step in the process is ensuring you have a current assessment on file. The adult assessment, or the Coordinated Assessment System (CAS), is for adults 18 and older and must be completed every two years. The child assessment, or the Child & Adolescent Needs and Strengths (CANS), is for children under 18 and must be completed annually. OPWDD will only approve services if there is an extenuating circumstance) if there is a current CAS or CANS on file. Your most recent CAS/CANS date can be found in the "My Health" narrative of your Life Plan. If you are unsure if your CAS/CANS is up-to-date, please contact your care manager, who can let you know your most recent assessment date and request an update of your assessment.

Pariva Health is available to support families with children ages 3 through 12 who have developmental delays, learning disorders, and other behavioral or emotional concerns. Our Family Support Program is all about tailored care, convenience, and caregiver empowerment. When you enroll, your family will receive 60-90 minutes of support per week via telehealth so that sessions can more easily fit into your schedule. As part of the program, you will receive a new Therapeutic Developmental Lego Playkit every six weeks with five play-based interventions designed to support your child’s needs. They also provide comprehensive mental health support for caregivers and their children. In the Family Support Program, you will have access to our multidisciplinary clinical team, including child psychologists, speech and language pathologists, occupational therapists, and play specialists. The goal of Pariva Health is to help caregivers feel empowered with the skills and knowledge necessary to feel like a “co-therapist” for their child. Please fill out an interest form on the Pariva Health website at the link below, or contact their enrollment team at enrollment@parivahealth.com or by calling 857-557-6146 to learn how they can support you today.

As a patient or family member of a patient in a hospital, it is important to know that you have the right to voice any concerns or grievances about the care or services you receive. Hospitals have established grievance procedures to address or resolve issues that may arise while you’re in their care.

What is a grievance? A grievance is a formal complaint or concern that you have about the care, treatment, or services provided by the hospital. This could include issues such as quality of care, patient safety, cleanliness, communication with staff, or any other aspect of your hospital experience you feel needs to be addressed.

How can you file a grievance? Hospitals have specific procedures in place for filing a grievance, empowering you to take control of your healthcare experience. You can speak to a nurse, social worker, patient advocate, or other hospital staff member to start the grievance process. Often, you may be able to submit a written complaint through the hospital's website or by mail. It is essential to provide as much detail as possible about your concerns, including dates, times, names of staff involved, and any other relevant information.

What happens after you file a grievance? Once a grievance is filed, the hospital will investigate the issue and work to resolve it in a timely manner. You may be contacted for more information or asked to meet with hospital staff to discuss your concerns. Hospitals take grievances seriously and strive to address them to ensure high-quality care and patient safety.

What if you are not satisfied with the outcome? If you are not satisfied with how the hospital handled your grievance, you have the right to escalate your concerns to higher levels of hospital administration, regulatory agencies, or other external organizations. Hospitals must provide information about escalating a grievance in their grievance procedures.

At the end of the day, your voice matters. Hospitals value your feedback and want to hear from patients and families about their experiences so that they can continue to improve the quality of care they provide. By understanding and utilizing hospital grievance procedures, you can help ensure that your concerns are addressed and that you receive the best possible care during your hospital stay.

Above: Care Coordination Manager Elayne Mosher-Campoli

Southern Tier Connect Care Coordination Manager Elayne Mosher-Campoli played a small but equally important role in helping Kati, a member of STC, succeed. Elayne has extensive experience in the human services field, which she has worked in since college. She worked at the former Upstate Home for Children, now Springbrook, then in respite care, and then moved into care coordination. Elayne first met Kati when she enrolled for services with STC in 2017; a few years later, Elayne became Kati's CCM, marking the beginning of a transformative educational journey.

Kati's educational journey began at home with an in-home-based school education due to her medical needs and a lack of adequate care and understanding available at the time. Getting her there, however, took a team of people, including CCM Elayne, medical providers, therapists, and her family. Initially, it was believed that in-home education was not medically viable due to Kati’s medical needs. She received no educational programming at home. The Family Resource Network stepped in and provided Kati with an educational advocate. She was enrolled at Cherry Valley Springfield Center shortly afterward, where her teacher and a team of educational providers, including occupational therapy, speech therapy consultants, and physical therapy, work together to offer her the in-classroom support she needs to achieve her academic goals. This has required getting everyone together for monthly meetings to ensure that Kati’s care, personal needs, and goals are on track and that each person can be updated on her progress.

Kati's journey required a responsive team that understood her unique needs and could ensure that she received the proper care. Despite her mobility limitations, Kati's determination and her family's unwavering support have been instrumental. Kati actively participates in most family activities thanks to her father's creativity and expertise in physical therapy by developing innovative home equipment. It took a few years to put together, but Kati’s family and the team behind her brought out her capabilities. Thank you, Elayne, Charlotte Valley, Kati’s entire care team, family, and friends, for the unwavering support of Kati’s education and life goals.

Above: Care Coordination Manager Carl Winter (pictured first in orange) with other STC staff from the Binghamton office.

Care Coordination Manager Carl Winter has been working hard to locate and establish third space programming for the people he supports and everyone supported by Southern Tier Connect. This initiative serves people with disabilities and finds spaces to provide activities and bridge the gap between care coordination organizations (CCOs) and the people who utilize their services.

“Third Space” is a broad term used to describe a space outside the home or school or institutions like the church or organizational centers like day habilitation where people can come together in their community. Third spaces include cafes and restaurants, cultural centers, and accessible, safe, and inclusive spaces. All of these amenities are important for civil society and civic engagement and are especially important to have in neighborhoods. Third spaces also play an important role in community integration for people with developmental disabilities. For Carl, the importance of third spaces is to “provide affordable or free opportunities for the members we serve to socialize with others in the community. When a member or their family reaches out to me for suggestions on activities in their community, I can recommend options for children, adults, and families.” Carl is always looking for low- or no-cost opportunities for everyone. If you have a suggestion, reach out to your care manager today!

OPWDD, in partnership with the New York State Parks and Department of Environmental Conservation (DEC) Lands, brought accessibility to the outdoors on Saturday, June 8th, for Get Outside and Get Together Day. Disability justice advocates have worked tirelessly to secure equitable access to outdoor spaces for everyone; Get Outside and Get Together Day is a day to celebrate inclusion in the outdoors and share outdoor spaces with everyone.

If you'd like to get outdoors, organizations like Disabled Hikers advocate for equitable outdoor access and provide resources for disabled persons like trail guides, guided community group hikes, an online community, and more. Check them out here: https://www.disabledhikers.com/

Did you Get Outside and Get Together on June 8^th? If you did, share your story with us and we’ll feature it on our social media!

We had the pleasure of sharing photos of Hamsuel (pictured to the right) getting some fresh air by playing basketball with Care Coordination Manager Emilie Perez. "...working with Hammy as his CCM has been great because I can watch his growth and see him reach his goals. I always leave our visits smiling because he has such great energy,” said Emilie.

Our new video series, Your Rights in 10, is all about YOUR rights. It continues with Your Right to Social Services. You can watch the latest video above or access all of the videos in the series here.