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The Campaign to Immunzye All New Yorkers

The County Health Officials of New York have a comprehensive website, Immunyze, for parents and professionals outlining the importance of vaccinations throughout the lifespan. It includes suggestions for vaccinations schedules as well as scholarly articles to help people make informed vaccination decisions.


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146 Links Digest January 2017

This month's issue contains the Lucille Packard Foundation's powerful photographic essay capturing the experience of families raising children with special health care needs. They are accepting additional entries, so tell your story! Additional information includes tips on how to prepare for well child visits, a chart that explains the difference between a school's identification or classification of a child and a clinical diagnosis, a resource guide for families who are concerned about their child's hearing, and strategies for providing sexuality education to children and youth with disabilities.


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Links Digest #145 December 2016

Open Enrollment for insurance coverage through the Affordable Care Act is still available through January 31st, however the plans will not have a January 1st effective date. If you are already enrolled, January 31st is the deadline to make any changes to 2017 plans. Also featured this month is information on creating family health history documents, Supplemental Security Income (SSI), Autism screening services, transitioning into adulthood and more.


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144 Links Digest November 2016

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.


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Links Digest #143 October 2016

Open enrollment for plans available through the Affordable Care Act begins November 1st.  Learn more about selecting a plan, and the deadlines for doing so, in this month's Links Digest.  Also featured are some great resources for assisting children with disabilities who are experiencing bullying and a comprehensive guide to air travel when your child has special health care needs.


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Links Digest #142 September 2016

This month's edition of Links Digest includes information on new HIPAA guidance from the Department of Health and Human Services, an archived webinar on strategies to use when appealing an insurance denial, information on developmental screenings, and a check-list for transition from pediatric to adult service systems.  We welcome your feedback to lperry@ptopnys.org.


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Links Digest #141 Summer 2016

This combined issue of Links Digest offers many useful back-to-school resources, including information on speech and language development, vision and hearing screenings, and dental health.  Did you know that students with learning disabilities are at higher risk of developing clinical depression?  Check out the article and know the signs.  Also included are many helpful links to improve communication with professionals and assist in financing care.


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Links Digest #140 June 2016

We are pleased to announce the return of our monthly Links Digest publication.  Links Digest features web-based resources on supporting families as partners in decision-making, accessing early and continuous screening services, partnering with professionals within a medical home, ensuring adequate insurance coverage, building effective community services that are easy to use, and planning for the transition to adult life.


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Links Digest #139 January 2014

This double edition of Links Digest includes information about the recent regulations published to define "home and community-based" in the provision of waiver services, news about the North Country Health Systems Redesign Commission, and resources to learn about the benefits of palliative care.  Recent legislation that extends insurance coverage for orally administered formulas for those with eosinophilic esophagitis is also referenced.  A Frequently Asked Questions list regarding use of individual NY State of Health marketplace insurance plans is featured.







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Links Digest #137 October 2013

This month's Links Digest includes an issue brief on self-directed services within a managed care model and news of an insurer dropping participation in Medicaid managed care plans.  It also contains information about implementation of the Affordable Care Act in NYS, notification that youth who have aged out of foster care may be eligible for Medicaid coverage until age 26 regardless of income, and a link to The Advocacy Atlas, a new resource tool for families.


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Links Digest #136 September 2013

The September Links Digest starts a series on accessing health insurance through the New York State of Health Marketplace.  Additionally, it includes an update on the Fully Integrated Duals Advantage demonstration (care coordination for those with both Medicare and Medicaid), information on the federal regulations pertaining to transportation by school districts, and a report on low flu vaccination rates for children with either intellectual disability or epilepsy, two high risk categories for flu complications. 


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Links Digest #135 August 2013

The importance of assessing and providing for the needs of family caregivers is highlighted in this month's Links Digest, along with news regarding a crisis in Early Intervention, insurance coverage for ABA (applied behavior analysis), and the latest on implementation of the Affordable Care Act in NYS.


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Links Digest #134 July 2013

The July edition of Links Digest contains information about the approved 2014 rates for health insurance plans that will be carried on the Health Benefit Exchange, OPWDD's plans for transforming employment opportunities for individuals with disabilities, and a study on compliance by specialty physicians with ADHD treatment guidelines.


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Links Digets #133 June 2013

The June edition of the Links Digest includes information about the agreement between NYS and Centers for Medicare and Medicaid Services to transform the OPWDD service system.  Additionally, recognize some great Dads and cast your vote in the Family Voices' Father's Day contest.


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Links Digest #132 May 2013

Learn more about New York's Health Benefit Exchange, the insurance marketplace created by the Affordable Care Act, in the May edition of the Links Digest.  The Health Benefit Exchange will begin enrollment in October for coverage effective January 1, 2014.


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Links Digest #131 April 2013

The April 2013 Links Digest highlights a NYSARC blog post discussing the framework for OPWDD's managed care system as developed during the 2013-2014 budget process.  This edition also includes a parent's account of how she learned to partner with geneticists, an interesting journal article regarding the connection between health homes and parental coping, and a list of key questions those considering college should ask of the Disability Services Office on campus.


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Links Digest #130 March 2013

The March 2013 issue of Links Digest includes information on the opportunity for public comment on proposed regulations for the Justice Center, a presentation by the Medicaid Redesign Team on the Governor's 30-day budget amendments, and news regarding a new HIPAA rule which will expand patient privacy protections and allow access to medical records in electronic format.


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Links Digest #129 February 2013

The February edition of Links Digest contains information about the Governor's 30-day budget amendments which are due February 22nd, an update on providing input to the Olmstead Plan Development and Implementation Cabinet, and clarification on the use of Family and Medical Leave for children 18 years of age or older.  It also includes information on changes to the parental consent requirements school districts must comply with in order to access Medicaid reimbursement and Rare Disease Day events taking place in NYS on February 28th.


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Links Digest #128 January 2013

The January edition of Links Digest includes information on Governor Cuomo's 2013-2014 State Budget, archived webinars on Emergency Preparedness and Newborn Screening, and updates on coverage for orthopedic footwear, compression stockings, and ABA services.
 


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Links Digest #127 December 2012

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Links Digest #126 November 2012

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Links Digest #125 October 2012

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Links Digest #124 September 2012

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Links Digest #123 August 2012

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Links Digest #122 July 2012

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Links Digest #121 June 2012

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Links Digest #120 May 2012

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Links Digest #119 April 2012

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Planning for the Future

A guide for families and friends of people with developmental disabilities


6th edition, 2006, New York State Developmental Disabilities Planning Council. Most families provide lifelong supports to their family members with a developmental disability. However, if you are like most families you have not planned very far into the future. In fact, seventy-five percent of families with a daughter/son with a disability never plan at all.


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Links Digest #118 March 2012

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Links Digest #117 February 2012

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Links Digest #116 January 2012

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Medicaid Fact Sheet

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Transition to Work or Post-Secondary Education

Taking responsibility, and being able to advocate for one’s own future education and employment will be different for each person.  For everyone, self-direction and autonomy are desired outcomes.  For parents caring for a child and advocating for their child’s needs and education, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence.    


Crucial to this is respecting and supporting an individual’s decisions regarding their future employment or education.  With funding from NYS’ Family to Family Health Care Information Center, the information included in this publication has been developed to assist families and youth with special health care needs and disabilities in exploring work and continuing education.


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Health Care and Transition

Taking responsibility and being able to advocate for one’s own health care will be different for each person.  However, for everyone, self-direction and autonomy are desired outcomes.  For parents who have cared for a child and advocated for their child’s health care, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence.   

 


 Crucial to this is respecting and supporting an individual’s responsibility for their own health care and their participation in decision-making.  With funding from New York State’s Family to Family Health Care Information and Education Center, the information included in this publication was developed to assist families and youth with special health care needs and disabilities.


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THE WORLD OF WORK: Points for Students to Consider

Parent to Parent of NYS, with funding as NYS Family to Family Health Care Information Center, has developed a guide of points for youth to consider when exploring work and career options.  For a young adult with a disability, there are items to consider before building a career, exploring employment opportunities, or taking a job. To achieve success and prepare for the world of work, it is important to ask  questions and consider particular strategies.


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Planning for the Future

A guide for families and friends of people with developmental disabilities 6th edition, 2006, New York State Developmental Disabilities Planning Council. Most families provide lifelong supports to their family members with a developmental disability. However, if you are like most families you have not planned very far into the future. In fact, seventy-five percent of families with a daughter/son with a disability never plan at all.
 


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Things You Should Know About Sedation and X-rays: Dentistry for Individuals with Disabilities

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Taking Care of Your Teeth and Gums

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Taking Care of Your Baby’s Teeth:  Dentistry for Individuals with Disabilities

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Oral Health Care: Suggestions from New York State individuals with disabiities and caregivers

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Preparing for the Dental Visit

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Our Requests for Medical Professionals

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Medicaid and State Health Insurance Coverage: Oral Health Care for Individuals with Disabilities

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Making a Dental Home for You and Your Child: Dentistry for Individuals with Disabilities

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All About Oral Health: Dentistry for Individuals with Disabilities

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New York Statewide School Health Services Center (NYSSHSC)

NYSSHSC offers information that will assist parents in gaining a better understanding about health care at school, what nurses are required to do, documentation, etc. http://www.schoolhealthservicesny.com/




Medicare Part D Training

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Medicare Part D Resources

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Medicare

Medicare is the federal health insurance program covering about 6 million people un age 65 with permanent disabilities.  People under 65 who receive Social Security Disability Insurance (SSDI) payments generally become eligible for Medicare after a two-year waiting period.


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CSHCN and PHCP Contacts - All Counties

Children with Special Health Care Needs (CSHCN) and Physically Handicapped Children's Program (PHCP) Counties - All counties in New York State.


CSHCN_PHCP_CONTACTS_-_ALL_Counties_March_20061.pdf

2016_CSHCN_NYC_Program_Contact_Information.pdf




Home and Community Based Services Waivers Fact Sheet

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Health Insurance Booklet

Information compiled by Parent to Parent of NYS to assist families in understanding health insurance terminology and make decisions regarding their helath insurance.


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Becoming a Service Detective: Locating Helping Resources and Financial Supports for Families

A NYS Citizens' Coalition for Children, Inc. training curriculum for foster and adoptive families parenting children with special needs.


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Autism Insurance Information Discussion Group

The Autism Insurance Information discussion group has been developed for discussions regarding medical insurance coverage for Autism.
The purpose is information sharing, ideas on working with the system of insurance provisions and ways of ensuring coverage is provided according to the laws that govern Insurance, Medicaid and Tricare. Within the Autism Community there is a wealth of information, experience and resources to address these issues, however there has not been a single source that is accessible for that information. This board is a place to bridge the gap, by providing a forum of sharing and collaboration.   http://health.groups.yahoo.com/group/autism_insurance_information/