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2023 Virtual Family Connect Summit

AGenda

Welcome (10:00AM - 10:05AM)

Welcome to ADAPT’s 2023 Virtual Family Connect Summit

Plenary Session - The Future of Healthcare for People with Disabilities (10:05AM - 10:55AM)

The first virtual presentation will be a plenary session from 10:05 am to 10:55 am discussing the future of healthcare for people with disabilities. It will feature Edward Matthews (CEO of ADAPT Community Network), Courtney E. Burke (Senior Fellow in Healthcare Policy, Rockefeller Institute and Consultant, Sachs Policy Group), Dr. Vincent Siasoco (Family Medicine Physician and Medical Director at ADAPT Community Network), and Shaniqua Freeman, and will be moderated by Tracy Pickar (Vice President of Family Services at ADAPT Community Network).

Addressing Parents Fears of Early Childhood Special Education, Scott Mesh, CEO & Co-Founder, Los Niños Services (11:00AM - 11:55AM)

Many parents have questions, concerns, or fears about special education. This session will address the most common parent reactions to the possibility of their child being recommended for early childhood special education. Dr. Mesh will provide clarity on the reality of early intervention and preschool special education to help parents take advantage of services when they can make the most difference in the lives of their children. From his many years of experience, Dr. Mesh will share how to move from challenging conversations to constructive conversations using words that work. This presentation will be highly interactive to address participants’ questions and challenges. Parents will find this workshop helpful in answering their questions. Professionals will find this workshop helpful in learning effective ways to have more positive conversations with parents.

Preserve Benefits and Protect Funds to Enhance Quality of Life, Sarah Grimes, Director of Outreach and Community Relations, NYSARC Trust Services (12:00PM - 12:55PM)

Join us to learn how to help families plan for the future of a loved one and preserve a person’s financial eligibility for Medicaid and SSI benefits using a special needs trust, pooled trust, or ABLE account. Medicaid in New York significantly raised the income and resource limits in 2023, while also awarding Social Security recipient’s an 8.7% COLA increase. This workshop will discuss these changes and the impact on individuals receiving means-tested government benefits and organizations who manage assets for consumers.


With Medicaid recertifications set to resume this year, attendees will learn creative ways to spend-down funds and tools to help protect funds when a person is at risk of losing benefits. We will discuss the benefits and differences between trusts and ABLE accounts and how these tools can give the people we serve greater financial security and the means to enhance their quality of life.

Lunch (1:00PM - 1:25PM)

Lunch Break

“Adulting”: Effectively Preparing Individuals with ASD, Mary E. McDonald PhD, Professor in Special Education Program, Hofstra University (1:30PM - 2:25PM)

The transition from adolescence to adulthood does not always receive as much attention as is needed. Often transition services are limited, leaving individuals with autism spectrum disorders (ASD) without the level of preparation needed for “adulting”. Areas such as communication, leisure skill development and vocational preference are often not fully addressed. We need to begin preparing individuals with ASD as early as possible for the future and place an emphasis on lifelong skills in our curriculum planning. The overall goal is for the individual with ASD to have the best quality of life possible. There are several variables that become increasingly important as a child with autism moves through adolescence and then onto adulthood. There will be a focus on the importance of communication, socialization, independence, and interdependence over time.

The Power of Peer Support for Siblings of People with Disabilities, Linda Monterroso-Hurtado, Chair of the Board of Directors, Sibling Leadership Network (2:30PM - 3:25PM)

This session will discuss the importance of providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. Siblings often have the longest-lasting familial relationships and become the next generation of caregivers when parents are unable to provide care. Most siblings anticipate fulfilling greater supportive and caregiving roles, the older they get. The peer nature of the relationship makes siblings uniquely positioned to support their brothers and sisters with disabilities to lead self-determined lives. This support can include many areas such as employment, relationships, healthcare, and more. While support programs and services have been developed for individuals with I/DD and their parents, support for siblings has been limited. Siblings of people with disabilities often find greater comfort and support in communicating with other siblings.

Questions & Answers (3:30PM - 4:00PM)

Speakers

Edward R. Matthews

CEO of ADAPT Community Network since 1989
Plenary Session
(10:05AM - 10:55AM)
Plenary Session

Courtney E. Burke

Senior fellow in healthcare policy, Rockefeller Institute and Consultant, Sachs Policy Group
Plenary Session
(10:05AM - 10:55AM)
Plenary Session

Dr. Vincent Siasoco

Family Medicine physician and Medical Director at
ADAPT Community Network
Plenary Session
(10:05AM - 10:55AM)
Plenary Session

Tracy Pickar

Vice President of Family Services at ADAPT Community Network
Plenary Session Moderator
(10:05AM - 10:55AM)
Plenary Session

Shaniqua Freeman

Plenary Session
(10:05AM - 10:55AM)
Plenary Session

Dr. Scott Mesh

CEO & Co-Founder of Los Niños Services
Addressing Parents' Fears of Early Childhood Special Education
(11:00AM - 11:55AM)
Session 1

Sarah Grimes

Director of Outreach and Community Relations at NYSARC Trust Services
Preserve Benefits and Protect Funds to Enhance Quality of Life
(12:00PM - 12:55PM)
Session 2

Dr. Mary McDonald

Professor in the Special Education Program at Hofstra University
"Adulting": Effectively Preparing Individuals with ASD
(1:30PM - 2:25PM)
Session 3

Linda Monterroso-Hurtado

chair of the Board of Directors for the Sibling Leadership Network
The Power of Peer Support for Siblings of People with Disabilities
(2:30PM - 3:25PM)
Session 4

Sponsors

Since 1972, NYSARC Trust Services has helped thousands of families plan for the future of loved ones with disabilities, preserve their eligibility for Medicaid and/or SSI benefits, and protect unexpected windfalls of money. Establishing a first- or third-party pooled supplemental needs trust through NYSARC Trust Services helps provide financial security to those with disabilities and peace of mind to their families and loved ones. Call (518) 439-8323 or visit https://www.nysarctrustservices.org/
nysarc-trusts
 for more information.

The Weinberg Family Cerebral Palsy Center at Columbia University Irving Medical Center are dedicated to improving the lives of people with Cerebral Palsy of all ages through comprehensive care, basic and clinical research, and education of medical professional, patients, and caregivers.

NY Connects is OPEN and operating remotely!  NY Connects program is a free, trusted place to go for information about benefits, resources, and services that support people with disabilities. We work with New Yorkers of all ages and with any type of disability. (Visible and Invisible) NY Connects can help people with disabilities:
• Remain independent
• Understand paths to care
• Discover transportation options
• Get answers about Medicaid, Medicare, and health insurance
• Apply for benefits including Guardianship,Homecare SSI, SSDI, and CDPAP
• Learn housing options
• Get help with food resources

Get in touch today to let us know how we can help 1-844-862-7930. Find NY connects online at https://www.cindy.org/nyconnects

INCLUDEnyc (www.includenyc.org) is the leading provider of training and information for young people with any known or suspected disability from 0-26, their families, and the professionals who support them in New York City. Last year, INCLUDEnyc assisted more than 14,000 people and reached almost 450,000 individuals through digital communications and community outreach. Founded in 1983, INCLUDEnyc believes every young person should be fully included in school, in the workforce, in the community – and should have access to resources, services, and supports to succeed.

The Start Here website was created to offer a one-stop shop of helpful information and resources to support parents of children with disabilities. The content on this website is geared specifically towards parents. Information on how to advocate for your child, questions to ask your child’s pediatrician or simple apps that can help families along their journey are some of the selections you can find at Start Here. Please visit the website www.StartHereParents.org, as well as our social platforms on Facebook and Instagram for the latest updates.

CP State is a broad-based, multi-service organization encompassing nearly 30 Affiliates and 19,000 employees providing services and programs for more than 100,000 individuals with cerebral palsy and developmental disabilities, as well as resources for families.
 

Multilingual Therapy Associates supplies bilingual and monolingual Speech-Language Pathologists, Speech Therapists, Occupational Therapists, and Physical Therapists on a contract basis to center-based preschools and a variety of school programs for special needs children. We provide early intervention and related services to children at all stages and ages, from 0 to 18 years of age. We are dedicated to providing the highest quality speech language therapy, occupational therapy, and physical therapy services to multilingual populations. We hope to embrace and build on the diversity of the populations we serve in the New York metropolitan area. To reach this goal, we select therapists who will advocate for the children they serve in whatever ways are appropriate professionally and ethically. This includes choosing therapists who understand how important it is to initiate and maintain contact with the child’s parents so that the therapist may be a resource for them, as well as for the teachers and other educational professionals involved in the decision-making process that affects any child’s educational potential.

The NYC Poison Control Center is an emergency telephone hotline. Poison Control Centers are staffed by registered pharmacists and nurses who are certified in poison information. Our specialists respond to both intentional and unintentional exposures by providing callers information on patient treatment, poison prevention and educational programs. Assistance is available 24 hours a day, 7 days a week. Calls are free of charge and confidential. In addition, translation services are provided in more than 150 languages. Call 212-764-7667 or 1800-222-1222 with any questions about medicines, cleaners and disinfectants. Help is a call away!

 

Every day, we protect and promote the health of 8 million New Yorkers. Our work is broad-ranging. You see us in the inspection grades of dining establishments, the licenses dogs wear, the low- to no-cost health clinics in your neighborhood and the birth certificates for our youngest New Yorkers. We are also behind the scenes with our disease detectives, investigating suspicious clusters of illness. Our epidemiologists study the patterns, causes and effects of health and disease conditions in New York City neighborhoods. These studies shape policy decisions and the City’s health agenda. The New York City Health Department is tackling these issues with innovative policies and programs and getting exceptional results. Visit https://www.nyc.gov/site/doh/index.page for more information. 

Since 1972, NYSARC Trust Services has helped thousands of families plan for the future of loved ones with disabilities, preserve their eligibility for Medicaid and/or SSI benefits, and protect unexpected windfalls of money. Establishing a first- or third-party pooled supplemental needs trust through NYSARC Trust Services helps provide financial security to those with disabilities and peace of mind to their families and loved ones. Call (518) 439-8323 or visit https://www.nysarctrustservices.org/
nysarc-trusts
 for more information.

The Weinberg Family Cerebral Palsy Center at Columbia University Irving Medical Center are dedicated to improving the lives of people with Cerebral Palsy of all ages through comprehensive care, basic and clinical research, and education of medical professional, patients, and caregivers.

NY Connects is OPEN and operating remotely! CIDNY’s NY Connects program is a free, trusted place to go for information about benefits, resources, and services that support people with disabilities. We work with New Yorkers of all ages and with any type of disability. (Visible and Invisible) NY Connects can help people with disabilities:
• Remain independent
• Understand paths to care
• Discover transportation options
• Get answers about Medicaid, Medicare, and health insurance
• Apply for benefits including Guardianship,Homecare SSI, SSDI, and CDPAP
• Learn housing options
• Get help with food resources

Get in touch today to let us know how we can help 1-844-862-7930. Find NY connects online at https://www.cindy.org/nyconnects

INCLUDEnyc (www.includenyc.org) is the leading provider of training and information for young people with any known or suspected disability from 0-26, their families, and the professionals who support them in New York City. Last year, INCLUDEnyc assisted more than 14,000 people and reached almost 450,000 individuals through digital communications and community outreach. Founded in 1983, INCLUDEnyc believes every young person should be fully included in school, in the workforce, in the community – and should have access to resources, services, and supports to succeed.

The Start Here website was created to offer a one-stop shop of helpful information and resources to support parents of children with disabilities. The content on this website is geared specifically towards parents. Information on how to advocate for your child, questions to ask your child’s pediatrician or simple apps that can help families along their journey are some of the selections you can find at Start Here. Please visit the website www.StartHereParents.org, as well as our social platforms on Facebook and Instagram for the latest updates.

CP State is a broad-based, multi-service organization encompassing nearly 30 Affiliates and 19,000 employees providing services and programs for more than 100,000 individuals with cerebral palsy and developmental disabilities, as well as resources for families.
 

Multilingual Therapy Associates supplies bilingual and monolingual Speech-Language Pathologists, Speech Therapists, Occupational Therapists, and Physical Therapists on a contract basis to center-based preschools and a variety of school programs for special needs children. We provide early intervention and related services to children at all stages and ages, from 0 to 18 years of age. We are dedicated to providing the highest quality speech language therapy, occupational therapy, and physical therapy services to multilingual populations. We hope to embrace and build on the diversity of the populations we serve in the New York metropolitan area. To reach this goal, we select therapists who will advocate for the children they serve in whatever ways are appropriate professionally and ethically. This includes choosing therapists who understand how important it is to initiate and maintain contact with the child’s parents so that the therapist may be a resource for them, as well as for the teachers and other educational professionals involved in the decision-making process that affects any child’s educational potential.

The NYC Poison Control Center is an emergency telephone hotline. Poison Control Centers are staffed by registered pharmacists and nurses who are certified in poison information. Our specialists respond to both intentional and unintentional exposures by providing callers information on patient treatment, poison prevention and educational programs. Assistance is available 24 hours a day, 7 days a week. Calls are free of charge and confidential. In addition, translation services are provided in more than 150 languages. Call 212-764-7667 or 1800-222-1222 with any questions about medicines, cleaners and disinfectants. Help is a call away!

 

Every day, we protect and promote the health of 8 million New Yorkers. Our work is broad-ranging. You see us in the inspection grades of dining establishments, the licenses dogs wear, the low- to no-cost health clinics in your neighborhood and the birth certificates for our youngest New Yorkers. We are also behind the scenes with our disease detectives, investigating suspicious clusters of illness. Our epidemiologists study the patterns, causes and effects of health and disease conditions in New York City neighborhoods. These studies shape policy decisions and the City’s health agenda. The New York City Health Department is tackling these issues with innovative policies and programs and getting exceptional results. Visit https://www.nyc.gov/site/doh/index.page for more information. 

Disclaimer: Workshops are intended for educational and informational purposes only. The views and information expressed by the presenters are their views and does not reflect the position or policy of ADAPT Community Network. Information included in presentations may not be suitable for all families. The content is not to be considered medical, therapeutic, or legal advice and the information provided is not a substitute for a professional opinion. ADAPT strongly suggests that you consult your doctor, social worker, and/or therapist regarding specific questions and for further information. In no event shall ADAPT be liable for any type of loss or damage that could be construed as arising from these presentations.

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Edward R. Matthews

Edward R. Matthews has been the CEO of ADAPT Community Network since 1989 following a career in NYS Government implementing the 1975 Federal Consent Judgment to find programs and homes in local communities for over 5,000 persons with Intellectual and Developmental Disabilities.

During the past 33 years, Matthews has overseen the growth of the agency from supporting individuals and families in four boroughs of NYC to now supporting over 25,000 families and individuals in a wide variety of services in eight counties including the Hudson Valley and employing over 3,000 staff.

In 2017, Matthews oversaw the complete renaming and rebranding of the agency from United Cerebral Palsy of NYC in order to both attract and continue serving a more diverse group of individuals needing their services. During this period, the agency became the largest provider of Early Childhood services in NY State.

Forbes has called Matthews a “powerhouse leader for people with disabilities.” He has sat on several state and national committees with assignments ranging from implementation of new services to reform of the Medicaid payment system, as well as the creation of independent Care Coordination Organizations, on one of which he served as its first Board President.

In order to ensure that ADAPT Community Network continues to provide the highest quality innovative services, Matthews has led ADAPT to be accredited by two national organizations, The Commission on the Accreditation of Rehab Facilities (CARF) and The Council on Quality Leadership (CQL), both with distinction.

Matthews was named a 2023 Notable Leader in Healthcare by Crain’s New York, has been the recipient of the 2022 Hausman Humanitarian Award by ADAPT, was awarded the 2022 and 2023 Healthcare Hero Award by Schneps Media, and has been honored by other organizations for his leadership.

According to Matthews: “Sometimes you choose your career, sometimes it chooses you. I’ve been very fortunate.”

Courtney E. Burke

Courtney E. Burke has served in a number of high-ranking positions in state government, healthcare organizations, and boards. Her positions have included, chief operating and innovation officer at the Healthcare Association of New York State, senior vice president and chief strategy officer for Albany Medical Center, New York State’s deputy secretary for Health as well commissioner of the Office for People with Developmental Disabilities, and Director of the Rockefeller Institute’s Health Policy Research Center. She currently serves as a senior fellow in healthcare policy at the Rockefeller Institute and as a consultant for Sachs Policy Group. Her current board positions include chair of the New York State Autism Spectrum Advisory Committee, trustee of the State University of New York, and board member of the New York Health Foundation.

Vincent Siasoco

Vincent Siasoco, MD, MBA, is a Family Medicine physician and Medical Director at ADAPT Community Network. He has over 18 years of experience working with individuals with intellectual and developmental disabilities in various aspects of healthcare and been involved with leading Article 28 and 16 clinics, Federally Qualified Health Centers, and an Accountable Care Organization. He is an Assistant Professor in both the Departments of Family Medicine and Pediatrics at the Albert Einstein College of Medicine and Director of Primary Care at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center at Montefiore Medical Center where he’s worked with faculty in infusing IDD curriculum at the medical school. He is a member of the Board of Directors at the American Academy of Developmental Medicine and Dentistry and at Mercy Home. He serves as Co-Chair of the NYS Office for People with Developmental Disabilities Medical Advisory Taskforce and Co-Chair of the Cerebral Palsy State Medical Director’s Council and Co-Chair of their annual Clinical IDD Conference. He is a Special Olympics Clinical Director and Chair of the Special Olympics New York Health Advisory Council.

Tracy Pickar

Tracy Pickar is the Vice President of Family Services at ADAPT Community Network. She was the Associate Executive Director at the Cerebral Palsy Foundation. Tracy also served as the Administrative Manager of the Weinberg Family Cerebral Palsy Center at Columbia University Irving Medical Center. She received her Master of Social Work from the University of Michigan and a Bachelor of Arts from Washington University in St. Louis.

 

Shaniqua Freeman

Shaniqua Freeman is a resilient individual who has overcome challenges to carve out a remarkable path of achievement and growth. From 2006 to 2012, Shaniqua found a supportive home within the ADAPT Community Networks residences, an experience that laid the foundation for her journey.

In 2012, Shaniqua’s determination and the collaborative efforts of ADAPT and The New York Times empowered her to embrace living independently for the past 11 years. The New York Times’ provision of essential furnishings marked an important moment and highlighted the significance of community support in her life.

In 2018, Shaniqua achieved a significant milestone by obtaining her GED diploma. This accomplishment served as a testament to her unwavering dedication and commitment to personal growth and academic excellence.

Currently, Shaniqua’s educational journey continues to flourish as she diligently pursues an associate degree in communications at the Borough of Manhattan Community College (BMCC) and works with influential figures in the field like DJ, Whutever from iHeart radio. Collaboration is made possible through the support of ADAPT Community Network, whose commitment to supporting Shaniqua in her journey to the Radio. Her pursuit of knowledge and passion for learning exemplifies her determination to reach new heights and make a meaningful impact on her community and beyond.

Dr. Scott Mesh

Dr. Scott Mesh is the Director of Young Child Learning, a website with online learning about early childhood development for professionals and parents. He is the CEO & Co-Founder of Los Niños Services which serves 2,000 young children with special needs each year through homecare & center services. He is a Clinical Psychologist with 30 years of experience working with young children and their families and is an expert on assessing young children for developmental disabilities and autism. He has helped thousands of parents over the years make the transition to gaining help for their children through early childhood special education services. He is a leader in early childhood development and how to work effectively with parents.

Sarah Grimes

Sarah Grimes is the director of outreach and community relations at NYSARC Trust Services, a 501(c)(3) non-profit that administers pooled supplemental needs trusts and has helped over 25,000 people in all counties of New York protect funds to qualify and maintain financial eligibility for Medicaid and SSI benefits.

Sarah has presented on supplemental needs trusts and government benefit eligibility at events for the New York State Office for the Aging, at New York State Bar Association section meetings, and at various regional bar associations throughout New York State. She routinely provides in-service trainings to attorneys, social workers, service providers, and families to raise awareness for the benefits of using a pooled trust to live independently in the community for as long as possible.

She is a strong advocate for trust beneficiaries, helping the individuals maximize the benefits they receive while using the funds in their trust to provide for life-enhancing items and services.

Dr. Mary McDonald

Dr. McDonald is a highly regarded Professor in the Special Education Program at Hofstra University where she directs the online Masters in Applied Behavior Analysis and the Advanced Certificate Programs, which includes the advanced certificate in ABA and the Advanced Certificate in Severe and Multiple Disabilities. Dr. McDonald has over 30 years of experience directing programs for students with autism, from early intervention through adulthood, and serves as the Associate Executive Director of Long Island Programs for Eden II. She completed her PhD in Learning Theory at the CUNY Graduate Center and is a Board Certified Behavior Analyst – Doctoral Level and is licensed in NY and Connecticut. Dr. McDonald is an author and researcher and has published a book on including students with ASD, as well as chapters on technology and evidence-based interventions. She also serves on the editorial boards of Behavior Analysis in Practice, Special Education, Research, Policy and Practice, and The Journal of the Academy of Special Education Professionals, among other professional advisory boards. Dr. McDonald presents at local, national, and international conferences on the topics of autism and applied behavior analysis and has received awards from the New York State Association for Behavior Analysis and The Association for Behavior Analysis International. Her published articles cover a wide range of topics including self-management, social reciprocity, PECS, scripts and semantic mapping, creativity, and universal design for learning.

Linda Monterroso-Hurtado

Linda Monterroso lives in Las Vegas, NV but was born and raised in the Bronx, NY. She has a brother, Steve, with intellectual and developmental disabilities (IDD) who lives in the Bronx. Despite the distance, Linda is involved in Steve’s care and is committed to finding ways for people with IDD and their families, to live full lives.

Linda serves as chair of the Board of Directors for the Sibling Leadership Network and is a Community Advocacy Committee member for the Nevada Center for Excellence in Disabilities at the University of Nevada at Reno.

Linda also served as a member of the Tennessee Governor’s Council on Developmental Disabilities. As a Council member, Linda was among a group of Tennesseans tasked with improving disability policies and practice, educating policymakers and the public through community collaboration.

Linda is a clinical research director by training and is currently working on her Doctorate in Health Sciences, focusing on the impact support has on caregivers of those with disabilities, and their health. She holds degrees from New York University and George Washington University. Linda Monterroso, MSHS