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Policy Guide for NBS Staff\u003C\/h1\u003E\n  \n\u003Cdiv class=\u0022field--name-field-sections\u0022\u003E\n  \u003Cdiv class=\u0022toolkit-section\u0022\u003E  \u003Cdiv class=\u0022paragraph paragraph--type--text paragraph--view-mode--default\u0022\u003E\n          \n            \u003Cdiv class=\u0022field field--name-field-body field--type-text-long\u0022\u003E\u003Cimg alt=\u0022March of dimes\u0022 data-entity-type=\u0022file\u0022 data-entity-uuid=\u00221bedc18c-ac34-4d15-af20-b1404e7c75c5\u0022 height=\u002290\u0022 src=\u0022\/sites\/default\/files\/inline-images\/march%20of%20dimes.jpg\u0022 style=\u0022border-radius: 0;box-shadow: none; margin-bottom:20px;\u0022 width=\u0022160\u0022 loading=\u0022lazy\u0022\u003E\u003Ch2\u003ESummary\u003C\/h2\u003E\n\n\u003Cp\u003EThe following provides a guide for newborn screening staff with\u0026nbsp;important steps to consider when making policy changes. Veteran NBS\u0026nbsp;advocates may also find it helpful.\u003C\/p\u003E\n\u003C\/div\u003E\n      \n      \n      \u003C\/div\u003E\n\u003C\/div\u003E\n  \u003Cdiv class=\u0022toolkit-section\u0022\u003E  \u003Cdiv class=\u0022paragraph paragraph--type--text paragraph--view-mode--default\u0022\u003E\n          \n            \u003Cdiv class=\u0022field field--name-field-body field--type-text-long\u0022\u003E\u003Ch2\u003EWhat You\u0027ll Need\u003C\/h2\u003E\n\n\u003Cp\u003ETo successfully address policy changes for newborn screening programs, you should determine\u0026nbsp;your state\u0027s specific needs in order to meet the \u003Ca href=\u0022https:\/\/www.hrsa.gov\/advisory-committees\/heritable-disorders\/newborn-screening-timeliness.html\u0022\u003Etimeliness goals\u003C\/a\u003E. Some steps will include:\u003C\/p\u003E\n\n\u003Cul\u003E\n\t\u003Cli\u003EBecoming familiar with your state\u0027s existing NBS transit times, courier service and operating hours\u003C\/li\u003E\n\t\u003Cli\u003EInvolving your health department\u0027s government liaison\u0026nbsp;\u003C\/li\u003E\n\t\u003Cli\u003EDeveloping contacts at other organizations who be interested in this issue, including those who advocate for maternal and child health, parents and caregivers, healthcare providers and hospitals. Newborn screening covers a broad array of conditions and the issue is of the and the issue of interest to advocates from rare diseases and research communities.\u0026nbsp;\u003C\/li\u003E\n\u003C\/ul\u003E\n\u003C\/div\u003E\n      \n      \n      \u003C\/div\u003E\n\u003C\/div\u003E\n  \u003Cdiv class=\u0022toolkit-section\u0022\u003E  \u003Cdiv class=\u0022paragraph paragraph--type--text paragraph--view-mode--default\u0022\u003E\n          \n            \u003Cdiv class=\u0022field field--name-field-body field--type-text-long\u0022\u003E\u003Ch2\u003EKey Steps\u003C\/h2\u003E\n\n\u003Col\u003E\n\t\u003Cli\u003E\u0026nbsp;Confirm your state\u2019s current newborn screening program\u2019s transit times, courier services and lab operating hours. See the \u003Ca href=\u0022\/view-state-profile\u0022\u003ENewSTEPs state profiles\u003C\/a\u003E.\u0026nbsp;\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Identify the mechanism for changing this policy. In some states, it can be changed through a state advisory committee or Board of Health. In others, it will require a change in regulation or through legislation. In many cases, it will require additional funding. \u003Cem\u003ESee ASTHO\u0027s Laws and Regulations Decision Tree in Section 3 of this toolkit\u003C\/em\u003E.\u0026nbsp;\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Determine whether there is currently an interest in your health department for a change in policy.\u003C\/li\u003E\n\t\u003Cli\u003EDetermine whether there is interest in the advocacy community to take action. Other organizations may already be considering work on the issue or willing to engage. Organizations interested in NBS policy include \u003Ca href=\u0022https:\/\/www.newsteps.org\/sites\/default\/files\/1_march_of_dimes_aga_field_national_state_affairs_staff_oct2017_sm.pdf\u0022\u003EMarch of Dimes\u003C\/a\u003E (see the list of contacts for each region \u003Ca href=\u0022https:\/\/www.newsteps.org\/sites\/default\/files\/1_march_of_dimes_aga_field_national_state_affairs_staff_oct2017_sm.pdf\u0022\u003Ehere\u003C\/a\u003E), \u003Ca href=\u0022http:\/\/www.babysfirsttest.org\/\u0022\u003EBaby\u0027s First Test\u003C\/a\u003E of Genetic Alliance, \u003Ca href=\u0022https:\/\/www.aap.org\/en-us\/Pages\/Default.aspx\u0022\u003EAmerican Academy of Pediatrics\u003C\/a\u003E, rare disease organizations, and hospital associations.\u0026nbsp;\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Determine your best arguments for promoting this policy change. State health officials and policymakers may be more interested in knowing about the short or long-term public health impact, cost, and cost-effectiveness, or the experiences of other states that have already implemented the change.\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Develop a fact sheet to explain the need for the policy change. See Section 5, Communication Materials, for more information.\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Tell an impactful story through a family experience or a narrative about a newborn screening program feature.\u003C\/li\u003E\n\t\u003Cli\u003E\u0026nbsp;Utilize social media to help educate the public and policymakers about the program\u2019s needs.\u003C\/li\u003E\n\u003C\/ol\u003E\n\n\u003Cblockquote\u003E\n\u003Cp\u003EFor more information, see \u0022Developing an Advocacy Strategy\u0022 (Chapter 3) in UNICEF\u0027s \u003Cem\u003E\u003Ca href=\u0022https:\/\/www.unicef.org\/evaluation\/files\/Advocacy_Toolkit.pdf\u0022\u003EAdvocacy Toolkit\u003C\/a\u003E\u003C\/em\u003E for additional information.\u003C\/p\u003E\n\u003C\/blockquote\u003E\n\u003C\/div\u003E\n      \n      \n      \u003C\/div\u003E\n\u003C\/div\u003E\n  \u003Cdiv class=\u0022toolkit-section\u0022\u003E  \u003Cdiv class=\u0022paragraph paragraph--type--text paragraph--view-mode--default\u0022\u003E\n          \n            \u003Cdiv class=\u0022field field--name-field-body field--type-text-long\u0022\u003E \u003Ch2\u003ETips on Writing a Policy Statement\u003C\/h2\u003E\u003Cp\u003EA policy statement describes an organization\u2019s stance on a particular topic and contributes to the policy base of the organization. Policy statements serve to clarify the intent, position, and justification to stakeholders and the general public.\u003C\/p\u003E\u003Cp\u003EA good policy statement should:\u003C\/p\u003E\u003Cul\u003E\u003Cli\u003EContain a clear statement of position, preferably in the first paragraph\u003C\/li\u003E\u003Cli\u003EInclude background and rationale for the position\u003C\/li\u003E\u003Cli\u003EInclude any relevant information and cite\/include links for other documents\u003C\/li\u003E\u003Cli\u003EAvoid any contradictory statements within the policy statement or with other organizational policy statements\u003C\/li\u003E\u003C\/ul\u003E\u003Cblockquote\u003E\u003Cp\u003EFor more information about policy statements and policy langugage, including examples, please refer to APHL\u0027s \u003Ca href=\u0022https:\/\/www.aphl.org\/aboutAPHL\/publications\/Documents\/NBS_RDBS_Toolkit_62014.pdf\u0022\u003EResidual Dried Blood Spot Educational Toolkit\u003C\/a\u003E.\u003C\/p\u003E\u003C\/blockquote\u003E \u003C\/div\u003E\n      \n      \n      \u003C\/div\u003E\n\u003C\/div\u003E\n\u003C\/div\u003E\n\n\n\u003C\/article\u003E\n\u003C\/div\u003E\n              \u003C\/div\u003E\n        \u003C\/div\u003E\n\n    \n  \n    \n  \n\u003C\/div\u003E\n\u003C\/div\u003E","settings":null},{"command":"scrollBottomCommand","nodeSelector":".js-node-contain-tab","scrollToSelector":".custom-tab-nav","message":"Provides an AJAX command for scrolling to the bottom of an element"},{"command":"insert","method":"replaceWith","selector":"#toolkit-additional-block-wrapper","data":"\u003Cdiv id=\u0022toolkit-additional-block-wrapper\u0022\u003E\u003Cdiv class=\u0022js-view-dom-id-4742bc0b4ca3c945c4a6435f1963be4fb14289e2fdd94e35870ecf6a8ca465ab\u0022\u003E\n  \n  \n  \n\n  \n  \n  \n\n  \u003Cdiv class=\u0022views-view-grid horizontal cols-4000 clearfix\u0022\u003E\n              \u003Cdiv\u003E\n                  \u003Cdiv\u003E\n\u003Carticle data-history-node-id=\u00221991\u0022 class=\u0022node node--type-section node--view-mode-teaser toolkit-sidebar\u0022\u003E\n  \n  \n\n  \n      \u003Cdiv class=\u0022field field--name-field-case-studies field--type-entity-reference\u0022\u003E\n              \u003Cdiv\u003E\n\u003Carticle data-history-node-id=\u00221998\u0022 class=\u0022node node-card node--type-case-study node--view-mode-teaser\u0022\u003E\n  \n  \n  \u003Cdiv class=\u0022card-case-study\u0022\u003E\n    \u003Cdiv class=\u0022case-study-primary_type icon-case-study\u0022\u003E\n      \u003Ch3\u003ECase Study\u003C\/h3\u003E\n    \u003C\/div\u003E\n    \u003Cdiv class=\u0022h3 sub-title\u0022\u003ETennessee\u003C\/div\u003E\n    \n            \u003Cdiv class=\u0022field field--name-body field--type-text-with-summary\u0022\u003E  \u003Ch4\u003E\u003Cstrong\u003EStaffing\u003C\/strong\u003E\u003C\/h4\u003E\n\n\u003Cp\u003EWhen the Health Commissioner mandated a six-day operating week, it took time for the laboratory to adjust to this change. One of the major impacts of expanding to weekend...\u003C\/p\u003E\n\n\u003C\/div\u003E\n      \n  \u003C\/div\u003E\n  \u003Ca href=\u0022\/resources\/toolkits\/timeliness-toolkit-expanding-newborn-screening-services\/tennessee\u0022 class=\u0022link link-text mt-2\u0022\u003ERead Full Case Study\u003C\/a\u003E\n\u003C\/article\u003E\n\n\u003C\/div\u003E\n          \u003C\/div\u003E\n  \n      \u003Cdiv class=\u0022shadow-card--sidebar\u0022\u003E\n      \u003Cdiv id=\u0022block-block-section-related-resources\u0022\u003E\n  \n  \n        \u003Cdiv id=\u0022toolkit-related-resources-wrapper\u0022\u003E\u003C\/div\u003E\n  \u003C\/div\u003E\n\n    \u003C\/div\u003E\n  \u003C\/article\u003E\n\u003C\/div\u003E\n              \u003C\/div\u003E\n        \u003C\/div\u003E\n\n    \n  \n    \n  \n\u003C\/div\u003E\n\u003C\/div\u003E","settings":null},{"command":"insert","method":"replaceWith","selector":"#toolkit-related-resources-wrapper","data":"\u003Cdiv id=\u0022toolkit-related-resources-wrapper\u0022\u003E\u003Cdiv class=\u0022toolkit-related-resources js-view-dom-id-844e1953e795ace8db8ad326c8ded06ae31fab1b3738704aeb00d99486c7db4b\u0022\u003E\n  \n  \n  \n\n      \u003Ch2 class=\u0022block-title\u0022\u003ERelevant Resource\u003C\/h2\u003E\n  \n  \n  \n\n  \u003Cdiv class=\u0022views-view-grid horizontal cols-4000 clearfix\u0022\u003E\n              \u003Cdiv\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/resource-library\/four-facts-policy-makers-should-know-about-newborn-screening-nbs\u0022 class=\u0022h3 icon-educational-tools node-related\u0022\u003EFour Facts that Policy Makers Should Know About Newborn Screening (NBS)\u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/toolkits\/timeliness-toolkit-expanding-newborn-screening-services\/law-and-regulations-decision-tree\u0022 class=\u0022h3 icon-toolkit node-related\u0022\u003ELaw and Regulations Decision Tree\u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n              \u003C\/div\u003E\n        \u003C\/div\u003E\n\n    \u003Cdiv class=\u0022views-element-container\u0022\u003E\u003Cdiv class=\u0022js-view-dom-id-85d557361e0d3b696b4c9b3fb7e4385d4e5b747b92a3030b74fa9a659c96ceed\u0022\u003E\n  \n  \n  \n\n  \n  \n  \n\n  \u003Cdiv class=\u0022views-view-grid horizontal cols-4000 clearfix\u0022\u003E\n              \u003Cdiv\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/resources\/webinars-events\/informational-newborn-screening-nbs-webinar-notice-proposed-rulemaking\u0022 class=\u0022h3 icon-webinars node-related\u0022\u003EInformational Newborn Screening (NBS) Webinar on Notice of Proposed Rulemaking: The Common Rule \u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/resource-library\/every-hour-counts-colorado-and-wyoming-newborn-screening-programs\u0022 class=\u0022h3 icon-videos node-related\u0022\u003EEvery Hour Counts by the Colorado and Wyoming Newborn Screening Programs\u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/resources\/data-visualizations\/operating-days-and-hours\u0022 class=\u0022h3 icon-data-visualizations node-related\u0022\u003EOperating Days and Hours\u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n                  \u003Cdiv\u003E\u003Carticle class=\u0022node node--view-mode-related node-related\u0022\u003E\n  \u003Ca href=\u0022\/resource-library\/newborn-screening-nbs-fiscal-planning-and-resource-allocation\u0022 class=\u0022h3 icon-educational-tools node-related\u0022\u003ENewborn Screening (NBS) Fiscal Planning and Resource Allocation\u003C\/a\u003E\n\u003C\/article\u003E\u003C\/div\u003E\n              \u003C\/div\u003E\n        \u003C\/div\u003E\n\n    \n  \n    \n  \n\u003C\/div\u003E\n\u003C\/div\u003E\n\n  \n      \u003Cfooter\u003E\n      \u003Cspan class=\u0022link link-button js-link-series\u0022\u003EShow more\u003C\/span\u003E\n    \u003C\/footer\u003E\n    \n  \n\u003C\/div\u003E\n\u003C\/div\u003E","settings":null}]