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Parent to Parent of New York State builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions.
COVID19 Service Announcement from Our Executive Director
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Exciting Announcement!
Parent to Parent of NYS- Employment Opportunity
Employment Opportunity Position Title: Regional Coordinator Location: based in Rochester office
Part-time, 20 hours per week
Learn MoreParent to Parent of NYS - Employment Opportunity
Employment Opportunity Position Title: Regional Coordinator Location: based in Staten Island office
Part-time, 20 hours per week
Learn MoreParent to Parent of NYS- Employment Opportunity
Employment Opportunity Position Title: Regional Coordinator Location: based in New York City office
Part-time, 20 hours per week
Learn MoreA Message from Parent to Parent’s Executive Director regarding New COVID-19 Cluster Zone Guidance
NEW PROGRAM CLOSURE GUIDANCE: Last evening, OPWDD issued guidance regarding the suspension and reduction of services in red and orange cluster zones, which are designated as COVID hot spots by the State of New York. OPWDD will be notifying affected providers who will in turn be responsible for notifying affected individuals, families, and Care Managers/CCOs. These mandated suspensions and reductions are effective as of Sunday afternoon, October 25th. It should be expected that these closures and suspensions may shift frequently as the data drives adding or removing the cluster zone designation.
NEW VISITATION GUIDANCE: Similarly, the NYS Department of Health has issued new guidance regarding visitation to congregate care settings located in cluster zones, including those settings run, licensed or regulated by OPWDD. In an IMPORTANT CLARIFICATION, we have been advised that the exceptions listed in this guidance document apply ONLY to Department of Health licensed facilities, for example hospitals. This is consistent with the visitation guidance that was previously in effect during the height of the coronovirus outbreak. We have encouraged OPWDD to seek written clarification of this from the NYS Department of Health. Again, where these visitation restrictions are required, they will go into effect tomorrow, Sunday, October 25th at 3 pm.
See letter from Executive Director and full guidance documents at the link.
Learn MoreEviction During a Pandemic: Family Stories from the Front Lines of the COVID Ermergency
Janice Fitzgerald, former Executive Director of Parent to Parent of NYS, shares her family's recent experience when her son, John, received a very unexpected eviction notice. The COVID emergency presents very real challenges for us all, but as is often the case, our loved ones with disabilities are at higher risk. Do you have a story to share? Please forward it to Valerie Colavecchio at vcolavecchio@ptopnys.org.
Learn MoreInterim Guidance Regarding Community Outings for Individuals Residing in OPWDD Certified Residential
On March 24, 2020, the Office for People With Developmental Disabilities’ (OPWDD) issued “COVID19: Suspension of Community Outings and Home Visitation”. That guidance document is hereby rescinded and replaced with the following guidance related to community outings. Effective July 15, 2020 for regions of the State that have entered into Phase Four in accordance the New York Forward Reopening Plan, community outings may resume for individuals living within OPWDD certified residential facilities. Furthermore, individuals may resume low risk activities, such as going to medical or professional service appointments and work, and participating in community-based outings, as described below, to the extent permitted by NY Forward, and consistent with the restrictions of this guidance and all applicable NYS directives.
Learn MoreREVISED COVID-19 Protocols for Direct Care Staff to Return to Work
Health Advisory: Revised Protocols for Personnel in Clinical and Direct Care Settings to Return to Work Following COVID-19 Exposure or Infection
This advisory supersedes guidance from the New York State Office for People With Developmental Disabilities (OPWDD) pertaining to the COVID-19 outbreak, entitled “Updated Protocols for Personnel in Clinical and Direct Care Settings to Return to Work Following COVID-19 Exposure or Infection,” released on March 28, 2020. This guidance applies to all facilities and services certified by OPWDD.
CLICK HERE TO READ FULL DOCUMENT
Learn MoreRevised Staffing Guidance For Management of COVID-19 (July 29, 2020)
Revised Staff Guidance for the Management of Coronavirus (COVID-19) in Facilities or Programs Operated and/or Certified by the Office for People With Developmental Disabilities
The following requirements are for providers of services to individuals with intellectual and/or developmental disabilities (I/DD) certified or operated by the Office for People With Developmental Disabilities (OPWDD). This includes staff employed by the OPWDD (State-Operated programs) and those employed by community organizations (VoluntaryOperated programs). State-Operated Facilities should also consult the information provided by the OPWDD Office of Employee Relations for further implementation considerations.
The guidelines outlined in this document are designed to minimize the risk for the transmission of COVID-19 from infected to non-infected persons. A safe environment is created and maintained with the tools the agency has at hand: modifying procedures for community outings and visitation; vigorous handwashing; meticulous attention to environmental hygiene; along with proper use of Personal Protective Equipment (PPE).
Learn More
Updated Guidance on Resumption of Day Programming Released
The interim guidance on reopening of day services certified by the Office for People With Developmental Disabilities has been updated as of this afternoon and is available: CLICK HERE . Changes in the guidance document are underlined. Note that some of the underlined text serves as a hyperlink to take the reader to additional information.
A few points of clarification:
- The day services document outlines reopening guidance for OPWDD’s certified day programs and services, both site and community based, including Day Habilitation, Prevocational Services, Sheltered Workshops, Day Treatment, and Respite. Day Hab Without Walls programs are included.
- Providers have to submit a Safety Plan and attestation of compliance to OPWDD, but these safety plans do not require approval of OPWDD before the provider can reopen.
- Providers are not required to reopen day programming at this time; if they choose to do so, they must be in compliance with the reopening guidance.
- Likewise, individuals are not required to participate in day programming. OPWDD will not take action with regards to a participant's service authorizations if they elect to not resume programming at this time due to concerns related to coronavirus.
- The most significant changes to the reopening guidance for day programs can be found in the transportation section of the document.
There have been no changes to other guidance originally released on Friday, July 10th pertaining to the resumption of home visits and community outings and an individual's return to their residence after an extended period away. Agencies must allow these activities and do so in compliance with the guidance documents -- they cannot opt out.
Providers still retain the right to "opt-out" or not participate in visits that take place on or within group home property. It is our understanding that approximately 10% of providers are still not participating in visits to the group home, but that some number of them are working with OPWDD to resolve issues regarding their ability to resume on site visitation.
We will continue to keep you informed and welcome your questions and feedback.
Best regards,
Michele Juda
Executive Director
Parent to Parent of New York State
COVID-19: Interim Visitation Guidance for Certified Residential Facilities
Dear Parents, Family Members and Caregivers,
The attached guidance document for visitation in OPWDD certified residential settings was released in the afternoon of June 18. The Executive Order allowing for visits in OPWDD certified settings is an exception to continuing visitation restriction orders.
It is important to keep in mind that residential providers are not required to provide visitation at this time, but may opt to do so upon attesting that they can adhere to each of the requirements in the guidance document. Furthermore, the guidance represents minimum standards. Providers can reserve the right to impose additional restrictions, upon notice to and approval by OPWDD.
It is also important to recognize that, upon notice to OPWDD, any facility opting to allow visitation under this guidance has the right to cease participation and end visitation access while visitation restrictions remain in place. As providers have much at risk should infection spread, as do each of the residents and their families obviously, it is important that visitors do their best to respect the guidelines. The provider is promising OPWDD the guidelines will be maintained and must remain comfortable making that promise.
We asked OPWDD about residents who may not be able to comply with mask wearing as this is a question many of you have posed to us. We were told that those with a medical contraindication fall under an existing exception to mask wearing guidance and that anyone unable to tolerate a mask due to their disability may be eligible for a reasonable accommodation, provided that other protective factors are put in place (outside visit, socially-distanced, everyone else wearing a mask, etc.)
Based on the conversations we have had with many of you, we recognize that these procedures and guidelines will likely continue to feel overly and unnecessarily restrictive and burdensome and perhaps even further damaging to your loved one. With that in mind, we asked about the path to further flexibility in visits. We were told that infection rates will be carefully monitored and guide next steps, but OPWDD was not able to comment on, or make any commitment, with regards to a timeline.
We welcome your continued stories and questions as we do our best to bring them to the attention of OPWDD, DOH, and the Governor's Office and we will continue to keep you updated as we learn more
Sincerely,
Michele Juda
Executive Director
Parent to Parent of New York State
Health Advisory: COVID-19 Updated Guidance for Hospital Operators Regarding Visitation - Dated 4/10
On March 18, 2020, the New York State Department of Health issued a health advisory, available on the Department’s COVID-19 website, regarding hospital visitation restrictions. On March 27, 2020, the Department issued updated guidance specific to obstetrical and pediatric settings. This advisory replaces all previously issued guidance regarding hospital visitation. Effective immediately, hospitals must suspend all visitation except...
Learn MoreOPWDD Service Provision Updates
Family Caregivers and Friends,
OPWDD has been working on the development of new services and revision of services to respond to the current COVID-19 crisis. We are sharing the following, which represents our best understanding of this evolving situation, to help keep you informed:
Emergency Respite
Some of you have heard or seen information being developed related to emergency respite services...
Learn MoreEducational and Other Related Resources for Families during School Shutdowns
The following are free, or at least temporarily free, resources for parents, caregivers, teachers, and others interested in assisting our students during these unusual times. Rather than share all the lists of sites that have been circulating online, a conscious effort was made to review these sites.
Learn MoreMessage from OPWDD Commissioner Kastner Regarding Day Program Services
03/17/20
Dear Friends and Colleagues:
I am writing to inform you of steps that the NYS Office for People With Developmental Disabilities (OPWDD) is taking to ensure the safety of all people with developmental disabilities who participate in day program services. OPWDD is hereby directing the temporary suspension of services at all Day Habilitation, Day Treatment, and Prevocational Services across the state effective no later than Tuesday, March 17, 2020 by 5 p.m.
We recognize that unexpected changes in scheduling, staffing, or a temporary suspension of day program services all represent significant hardships for families who support their loved ones in their homes. Day program services for people with developmental disabilities allow families to meet their other needs, including earning a living and providing care to other family members.
OPWDD has asked providers of day program services to provide alternative programming for families that will be negatively affected by the suspension of services. Additional guidance that has been provided by OPWDD to our voluntary providers is available on our website at https://opwdd.ny.gov/news_and_publications/coronavirus-guidance-opwdd-service-providers. The health and well-being of the people we mutually support is of utmost importance and OPWDD will continue to monitor the situation and provide additional updates as new information becomes available.
Sincerely,
Theodore Kastner, MD, MS Commissioner
Learn MoreIntroducing Text4Caregivers
At Parent to Parent we understand that being a special needs caregiver is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed. Caring for a special needs child can feel overwhelming at times, leaving little or no time for the caregiver. Our Text4Caregivers program will help. Parent to Parent of NYS, with funding from the Developmental Disabilities Planning Council, has created a free support service that will distribute timely and relevant self-care and stress-management support through text messaging. As a caregiver, you take care of others; this service exists to remind you to take care of you. Available in English and Spanish, the goal of Text4caregivers is to offer special need caregivers easy access to a wide variety of information and resources.
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En Parent to Parent of NYS entendemos que al ser un cuidador de un ser querido con necesidades especiales, se aprende sobre las habilidades que usted no sabia que poseia y a manejar los temores que no conocia que enfrentaria. Cuidar a un hijo/a con necesidades especiales puede ser una situacion, por momentos, muy sobrecargado dejando muy poco tiempo para usted. Nuestro programa de Text4Caregivers prodra ayudarlo. Con la colaboracion de el consejo de planeamiento de discapacidades en el desarrollo, Parent to Parent of NYS a creado un servicio gratuito de mensajeria por texto a su celular que le enviara frecuentemente informacion para recordarle de su autocuidado y como manejar su estres. Disponible en español e ingles, la meta de Text4Caregivers es ofrecer al cuidador un facil acceso a diversa informacion de como cuidarse usted mismo para poder cuidar de otros.
Learn MoreFAQ Document: Vaccination Requirements Applicable to All Students
A new Frequently Asked Questions About Vaccination Requirements document - Vaccination Requirements Applicable to All Students, issued jointly by the New York State Department of Health, Office of Children and Family Services and the State Education Department, has been posted on the State Education Department’s Student Support Services website. This document is in follow-up to the Frequently Asked Questions About Legislation Removing Non-Medical Exemptions from Vaccination Requirements issued on June 18, 2019.
Learn MoreI/DD Identification Cards Now Available
A new state law allows identification cards to help assist with emergency responders are now available to individuals with ID/DD needs through OPWDD. The cards are meant to be a means of sharing needs with first responders and others when communication may be an issue. Please note that these are not picture ID cards but could prove to be a valuable aid for our loved ones who require assistance when interacting with others, particularly with emergency personnel who may not understand their needs. To obtain a card, complete the NYS OPWDD I/DD Identification Card Request Form
Learn MoreOPWDD People First Care Coordination
The Office for People With Developmental Disabilities is making an important improvement to the way services are coordinated for people with intellectual and developmental disabilities in New York State, known as People First Care Coordination. Under this new model, the Medicaid Service Coordination (MSC) program which is currently used to help people plan their services will be replaced by a new and improved program called Health Home Care Management.
People First Care Coordination
Learn MoreCOVID19 Service Announcement from Our Executive Director
April 9, 2020
Dear Parents, Family Caregivers, Community-Based Partners and Friends,
Hopefully this finds each of you well and healthy in these extraordinary circumstances.
We know that in addition to receiving information and having basic and disability-related needs met, parents always have, and always will, need some emotional support... someone to talk to when stress, frustration, and tensions are mounting. Better yet if that "someone" is another parent living the experience.
Parent to Parent of NYS continues to be in business to provide that support and our mission to ensure no parent or family caregiver feels alone is even more important today.
Our staff continues to be available remotely to provide information and referral, facilitate Parent Matches, and conduct trainings. Text4Caregivers, a free to end-user text messaging program which provides stress management and well-being prompts for caregivers, is particularly relevant at this time. Parent Group meetings are being conducted online, as a new modality to meet the demands of this current crisis.
We can be reached by phone through our Regional Offices (http://parenttoparentnys.org/offices/maps/), with the exception of Staten Island and Hudson Valley. For those offices, and for anyone else who needs assistance in being connected to one of our Regional Coordinators, please call 1-800-305-8817.
- Sign-up for Text4Caregivers (English) here: https://platform.trumpia.com/onl.../ddpctext/text4caregivers
- Sign-up for Text4Caregivers (Spanish) here: https://platform.trumpia.com/onlineSignup/ddpctext/spanish
This brief Facebook Live video describes our current services and commitment to our community:
Additionally, we invite you to join us in a project of hope. Please assist us in getting the word out so parents and family caregivers and their children with developmental disabilities and other special health care needs (young and grown) can help us paint and craft rainbows and handprints of love on Parent to Parent of NYS' Facebook wall. We can't wait to see your faces! Submissions are due Wednesday, April 15th. More information, including submission instructions, can be found here (this is also a Facebook link, no account is necessary to view): https://bit.ly/3c5WLAE
With our most sincere best wishes to your family,
Michele Juda
Executive Director
Parent to Parent of NYS
161 Links Digest July 2020
Healthcare transition refers to the process of moving from a pediatric health care model to an adult care model. Changes in roles and expectations will take place whether your child has been treated by pediatric or family doctors/specialists. In addition, legal changes take place at age 18 so it is important to start the process in advance in order to prepare your child and yourself for these changes. This month's Links Digest provides links to assist wherever your child is on this journey.
Learn More160 Links Digest June 2020
The NY State of Health continues to be open amid the COVID-19 crisis and we provide you links with both information and answers to your questions. Also included this month are links regarding proposed amendments to the 1915C HCBS Waiver, resources explaining public benefit programs for children with disabilities, and resources to talk to kids about race.
Learn More159 Links Digest May 2020
COVID-19 has changed the ways in which we receive primary medical care. Many offices have been closed or operating on very limited schedules for in-person visits. This month we provide guidance on when to contact your child's primary car provider, what warrants an in-office visit, what can be done via telehealth, and what to do about missed vaccinations. We also provide the updated CDC link vaccination schedule that has been revised due to COVID-19.
Learn More158 Links Digest March 2020
This Links Digest contains information on NY State of Health Insurance Marketplace which has been reopened until May 15th amid the COVID 19 pandemic and information links for telehealth/telemedicine which is being used by many of our medical providers for evaluations due to social distancing requirements.
Learn More157 Links Digest February 2020
Families of children with complex health care needs often have added expenses related to the care of their children. This month we provide links that can ease the financial burdens families face, including articles on tax and financial planning.
Learn More156 Links Digest January 2020
Happy 2020! NY State of Health Insurance Open Enrollment ends on January 31st. This is your last chance to enroll in a plan for 2020 unless you qualify for a special enrollment period. To start the new year, this month's Links Digest provides information to assist families and professionals with Medicaid Managed Care and service program design and implementation. A new year is a great time to reflect and give ourselves some focus. We have provided links that can help you find ways to make 2020 a great year for you and your family.
Learn More155 Links Digest December 2019
This edition provides resources specific to the care of children and youth with special health care needs (CYSHCN) by providing links to the new National Standards of Care and how to better communicate with patients who have developmental disabilities. We also provide some links to help make sure your family's holidays are joyous and stress-free.
Learn More154 Links Digest November 2019
The New York State of Health marketplace is now open for individuals, small businesses, and families to purchase health and/or dental insurance for plan year 2020. Please see this education for important dates and information. Also in this edition is information about no-cost Person-Centered Planning Comprehensive System Transformation training being offered throughout the state until the end of 2020, an article and webinar about challenges to the field of home care pediatric nursing, and finally some information to help you and your family have a great Thanksgiving holiday.
Learn MoreRecommended
Family Support Services Advisory Councils Info Letter (NYS OPWDD, 2018)
Learn MoreFamily Support Services Advisory Councils Booklet (NYS OPWDD, 2018)
Learn MoreBridges to Health
The Bridges to Health (B2H) Home and Community-based Medicaid services waiver program is designed to provide children in foster care who have significant mental health or developmental disabilities, or health care needs, with services to help them live in a home or community-based setting.
Learn More
State Employees' Federal Appeal
Please consider donating to Parent to Parent of NYS during this year's State Employees' Federal Appeal Campaign.
