New York State Education Department (NYSED) proposed amendments to school health regulations that would reduce the burden on school districts to provide emergency care, such as epinephrine injections, and conform with recent changes to statutory requirements.
The amendments address many requests from parents, healthcare providers, schools, and the New York State Department of Health to improve health services for students. The public will have 45 days to comment on the proposed changes beginning Jan. 25.
For full information click here to visit the NYSED news release.
Open enrollment for the Affordable Care Act is underway. For coverage to be effective as of January 1st, enrollment must be completed by December 15th. Learn more about applying for coverage through NY State of Health, care mapping, and an opportunity to provide the Centers for Medicare and Medicaid Services feedback on how to expand community-based services in this month's edition of the Links Digest.
The New York State Multiple Systems Navigator Website provides easy access to helpful health, education, human service and disability information in a user-friendly website. The website is designed for youth, parents, family members and caregivers.
Some of the information available include:
OPWDD recently completed a public comment period for updates to the 1915 (c) Comprehensive Home and Community-Based Services (HCBS) Waiver, with more than 150 individuals or organizations submitting questions or comments. The completed assessment and response to this public comment and the updated Waiver submission is now available on the OPWDD website. Further issues remain to be addressed and further changes to the Waiver are anticipated.
In 2015 the Office of People with Developmental Disabilities Balancing Incentive Program provided St. Mary's Healthcare System for Children a grant to assess the need for services for the aging out medically fragile population in New York State, and to develop a pilot group home model for young adults with medical fragility. Young adults with complex care and medical fragility frequently face challenges finding care settings prepared to meet their unique needs. With limited skilled nursing facilities that serve their age demographic and a few group homes capable of meeting their complex clinical needs these young adults are often relegated to social isolation in institutional settings intended for the elderly or left to be cared for by their aging parents struggling with inadequate support.
Using this funding opportunity to carry forth project goals in tandem with policy and capital project components St. Mary's partnered with Family Residences and Essential Enterprises (FREE) and developed a model for a medically supervised IRA to ensure that young adults aging out of pediatric settings - both at St. Mary's skilled nursing facility, and throughout the state - receive long term services and supports in an environment that is age appropriate, enriching, family-centered, and community-based. The pilot residence which is anticipated to open in July 2017 is designed to provided support to eight young adults who are medically fragile and require 24/7 care.
In addition, St. Mary's Healthcare System for Children in partnership with the healthcare research firm of Manatt, Phelps and Phillips completed a formal assessment of the medically fragile population in New York State. Attached below are the results of this analysis in the enclosed report; Children and Young Adults with Medical Fragility; A Population Needs Assessment.
The Justice Center for the Protection of People with Special Needs announces the winners of the 2016 Code of Conduct Recognition Award. This award honors staff who embody the ethical standards outlined in the Code of Conduct for Custodians of People with Special Needs. Family members, personal representatives and provider agencies submitted the names of 60 candidates to the Justice Center and 17 individuals were selected for recognition.
Of those nominees, the Justice Center's Advisory Council selected four individuals to receive the 2016 Code of Conduct award at an award ceremony which was held on Sept. 29. The winners, listed below, work in programs overseen by the Office for People With Developmental Disabilities (OPWDD) and the Office of Mental Health (OMH):
The following individuals were also recognized for their good work:
Members of the Justice Center's Advisory Council reviewed the nominations and selected award winners who demonstrated an unwavering commitment to the Code of Conduct Recognition Award received a certificate and were honored at an Advisory Council luncheon.
Photo courtesy of The Justice Center. Featured in the photo:
Front row l-r : Susan Polmateer (Saratoga Bridges), Rose Hoseler (Family Care Provider), Diane Celano-Carnahan (Options for Community Living, Inc.),
Back row l-r: Glenn Liebman (Justice Center Advisory Council), William Gettman (Justice Center Advisory Council, Chair) Rickie Hoseler (Family Care Provider), Michael Maloney (Unity House), Jay Kiyonaga (Justice Center, Executive Deputy Director)
New York – Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) invites anyone with PKU or the parent/guardian of a child with PKU to participate in a survey about formula and medical foods for treat of phenylketonuria (PKU). The results of this 20 minute survey will give information to policy makers about the needs of people with PKU. It will also provide information that will be used to help other parents and people with PKU. Please take the survey online at https://surveymonkey.com/r/NYMACPKU
"These notable organizations and websites help kids with special needs." Click here to read their article.
Mary Jo Hebert, Regional Coordinator in Parent to Parent of NYS' Capital District office, moves beyond the headlines about human genome mapping to the very personal importance of genetic science for families raising children with disabilities in this beautifully written op-ed piece published by the Albany Times Union April 25, 2015. (Shared here with permission)