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VOIX DE FAMILLE COLORADO Parlant au nom des enfants et des jeunes ayant des besoins spéciaux en matière de soins de santé NOTRE MISSION Faire du Colorado un meilleur endroit pour les enfants ayant des besoins spéciaux en matière de soins de santé. SUR Voix de la famille Colorado Family Voices Colorado est une organisation de base dirigée par des parents d'enfants ayant des besoins de santé spéciaux. Chaque jour, nous donnons aux parents les informations et les connaissances dont ils ont besoin pour naviguer dans des systèmes de soins de santé complexes afin d'obtenir des choses comme des fauteuils roulants, de l'oxygène ou une chirurgie pour leurs enfants. Avec notre aide, les parents peuvent être les héros sur lesquels comptent leurs enfants ! Vous voulez en savoir plus sur la façon dont Family Voices Colorado peut vous aider, vous et votre famille ? Apprendre encore plus CE QUE NOUS FAISONS Family Voices offre de nombreux services de soutien aux jeunes ayant des besoins médicaux spéciaux et à leurs familles. Lisez ci-dessous certains des services que nous offrons aux familles Voir les services La navigation Family Voices Colorado comprend à la fois les systèmes de soins de santé et d'invalidité privés et publics.Et nous reconnaissons leur complexité. Nous aidons les famillesnaviguer assurance maladie publique ou privée, soins primaires ou spécialistes médicaux, dérogations HCBS (services à domicile et communautaires), intervention précoce, services en milieu scolaire, conseils communautaires, problèmes de tutelle, transition des services de soins pédiatriques aux services de soins pour adultes ou autres systèmes connexes Apprendre encore plus Éducation et ressources Nous proposons des formations pour les familles, les professionnels et autres sur une gamme de sujets, notamment : Aide médicale 101 (HCBS) Dérogations aux services à domicile et communautaires - Enfants et adultes Appels des assurances privées et publiques Modèle de soins en maison médicale Mobilisation familiale Financement Naviguer dans les systèmes de soins Et beaucoup plus... Learn More Plaidoyer Family Voices CO écoute les familles et comprend les défis auxquels elles sont confrontées. Nous recueillons des histoires de famille à partager avec les législateurs des États et d'autres décideurs sur la manière dont les lois ou réglementations proposées sont susceptibles d'affecter les jeunes et les familles que nous servons, et nous collaborons avec d'autres organisations de défense des droits pour informer et mobiliser le public. Learn More Politique Nous collaborons régulièrement avec les ARC, le Colorado Center on Law and Policy, la Colorado Consumer Health Initiative, la Colorado Coalition for the Medically Underserved, la Colorado Cross-Disability Coalition, les Community Centered Boards, Covering Kids & Les familles et les agents de liaison des départements de la politique et du financement des soins de santé et de la santé publique et du département de la santé et de l'environnement du Colorado, pour travailler à des changements de politique visant à améliorer les systèmes et les services pour les enfants et les jeunes ayant des besoins spéciaux en matière de soins de santé. Learn More COMMENT VOUS POUVEZ AIDER Family Voices offre gratuitement des services d'information et d'orientation. Nous ne refusons jamais quelqu'un qui a besoin de notre aide. Les familles et les prestataires comptent sur nous pour être là pour eux. Nous comptons sur VOUS pour nous aider à continuer à rendre nos services accessibles à tous ceux qui en ont besoin. DONATE Contact LETS CHAT Contact Us info@familyvoicesco.org Toll Free: 855-877-1747 Local CO: 303-877-1747 Fill out our New Client Intake Form General Inquiries First name* Last name Email* Phone Write a message Submit

Helping you stay healthy Medical Resources Justifying Medical Necessity Seizure Protocol Blank Medication Schedule Justifying Medical Necessity Please click here to download the PDF Clic aquí para descargar un modelo de la carta con guía en Español Writing a Letter of Medical Necessity Include the following information: Full name of child, names of parents (parents and child may have different names) Date of birth of child Insurance plan name (there may be more than one plan) Relevant diagnoses (codes are helpful only if they are accurate! Ask the doctor.) Item/service being requested Why the item/service is medically necessary (refer to the insurance plans’ definition) What positive/negative impacts the item/service will result in (include financial) Scope and duration of treatment Supplemental documents (pictures, letters from other providers, research articles, product information, Prior Authorization Request) Include funding streams NOT able to help (denial letters, help) Terms to use: medically necessary clinically based promoting independence preventing secondary disability cost-effective safety Terms to avoid: custodial rehabilitate developmental delay/disability speech delay (without a diagnosis such as aphasia) Caregiver convenience Ask if your Letter of Medical Necessity answers the following: Is there a licensed provider stating in writing the item/service is medically necessary? Is this item/service not for care giver convenience? Is this item/service costs effective and if so have you explained how? Is this item/service considered standard medical practice? Have you explained how long and how often the item/service will be used. Is this item/service right for the need of individual? The Responsibilities of Each Role Care provider needs to: Know the process if the parent is not yet skilled Know pertinent benefits Know limitations and exclusions Know the appeals process Know terms and their definitions Distribute instructive materials to parents (empowerment) Write perfect letters of medical necessity Parent needs to: Become knowledgeable about the policy Supply information to providers Keep a paper trail of all communications Confront conflicting information Advocate’s role is to: Assist with the appeals process Guide providers and parents to resources Influence systems’ change Example Letter: Full name of parent’s Insurance ID: Full name of Child: Date of Birth: Diagnosis codes: Dear Insurance person: Date: This letter is to communicate the medical need for a ________________________. My child____________________, has the medical diagnosis requiring this device/service. I have researched other devices but feel this is the best device for my child. Other devices don’t have the ability to tilt in space, the __name of device_________________ has this ability, allowing for multiple positions. Multiple positions are important as _name of child__________must be repositioned often to reduce spasticity. The positions also allow this device to grow with my child. Reducing the need for another device to be purchased in a few years. This device was recommended by a licensed therapist, see attached letter. Without this device my child will require additional therapies and costly surgeries in the future. I am sure you get letters asking for things every day. I am including a picture of __name of child____________ using this device, to assist you in understanding the importance having this device. If this device is not approved the child will – cost more money, lose mobility, lose community access. I do plan to go through the appeal process if this device is not funded. Your company’s definition of medical necessity is: I am communicating that this device for my child fits your definition for the above reason. Don’t hesitate to call or email if you need additional information, related to this decision. I look forward to hearing from you. Sincerely, Name, ID# Address Phone Email Attachments: Doctors, therapist or professional letter Picture Marketing material about device Justifying medial necessity Seizure Protocol Click here to download the PDF in English Clic aquí para descargar PDF en Español Example of a Seizure Action Plan Name: DOB: Diagnosis: Emergency Contact: Phone: Name_______________'s MEDICAL History: MEDICATIONS: _______________________ HISTORY:____________________________ Patient, has a history of seizures, displayed by for Seconds/minutes. NOTE: If has a seizure lasting longer than minutes: Call: parent: name: phone: Call 911 if seizure lasts longer than 5 minutes and no rescue medications are available. Seizure Protocol Blank Medication Schedule Click here to download the Blank Medication Schedule Form in English Click aquí para descargar un modelo del horario de medicamentos en Español Blank Medicatin Schedule

Family Coalition Better Together The Family Coalition is a new entity in the policy arena, representing Children and Youth with Special Health Care Needs (CYSHCN) and disabilities. The Family Coalition is made up of five grassroots organizations who focus on the rights of families and their beloved family members with disabilities. We all share a common vision and values. This coalition strives to be the “go to” for policy makers and families with children and youth with disabilities in the State of Colorado. Coloado Agencies & Resources Disabiliy spcific Org What we can do for you: We are a resource We can provide testimony on the State Level and the Federal Level We can organize studies and research, related to CYSHCN. Our policy focus is ages 0-26 If we cannot help you, we will aim you the right direction to get a resource and/or an organization that can provide help Our Vision: The voices of families and individuals with disabilities are heard, valued, and respected. Our Values: Family-led Authentic Partnership Shared Knowledge The Family Coalition strives to be the “go to” for families with Children and Youth with Special Health Care Needs and disabilities, throughout the state of Colorado. Who We Are: El Grupo Vida El Grupo Vida empowers Spanish speaking families, including immigrants with disabilities and their families, with information, training, and direct advocacy to help become more self-sufficient and give that community a voice, raising awareness about their rights. Resource Center and Training Community Navigation Support Groups and Conferences Family Voices Colorado Family Voice CO works to improve health care access and equity for children and youth with special health care needs. 1:1 Systems Navigation for Families and Professionals Education and Training on Healthcare and Disability Systems Policy Work to Improve the Systems that Serve CYSHCN Parent to Parent Colorado Parent to Parent of Colorado works to connect families of individuals with disabilities to peer support. One-to-one Trained Support Parent Matching Private Online Discussion Group for Caregivers Virtual Support groups & Books Clubs Peak Parent Center As a result of PEAK’s services to families and professionals, children and adults with disabilities will live rich, active lives participating as full members of their schools and communities. Parent Training & Information Center/Parent Advising & Support Personal Networks for Transition Through Education Building Inclusive Schools & Communities for Families Show and Tell Show and Tell informs and empowers ALL families particularly BIPOC (Black, Indigenous and People of Color) families to speak on behalf of their children who have disabilities so they can become contributing members of their community. One-to-One Parent Advising Workshops and Trainings Informative Bi-weekly Newsletter

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Quick Guides Fast Facts Information Sheets Fast Facts: Health first Colorado (Medicaid), CHP+, & Children's buy-in income limits View Download Fast Facts: Resources: Colorado Educational and Disability Specific View Download Fast Facts: Resources: State, County, and Disability Organizations View Download

Family Voices Colorado - Privacy Policy Family Voices Colorado (FVCO) is committed to protecting your privacy. We collect personal information—such as name, contact details, and information you voluntarily provide—solely to deliver our services, communicate with you, and improve our programs. We do not sell or share your information with third parties, except as required by law. We use cookies and similar technologies to enhance website functionality and understand how visitors engage with our site. You can control cookie settings through your browser. By using our website, you agree to the terms of this Privacy Policy. We may update this policy as needed and encourage you to review it periodically. If you have questions or would like to access, correct, or delete your personal information, please contact us at info@familyvoicesco.org .

Find more help Agencies & Resource Organizations Ability Connection Colorado Service Name Service Name Service Name Service Name Service Name

CFC and Waiver Members Adult HCBS Waivers Confused at how the new CFC program will impact you or your family member who is currently an adult on an HCBS waiver? Find your info sheet below to learn what details are most relevant to you. CFC for DD Members CFC for SLS Members CFC for EBD Members CFC for CIH Members CFC for BI Members CFC for CMHS Members

About Us Who we are Overviw Overview of Family Voices Colorado Family Voices Colorado is a grassroots organization run by parents of children with special healthcare needs. The support you receive is from someone who understands the many challenges of having a child with special health care needs in their life. Every day we give parents the information and knowledge they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or a surgery for their children. With our help, parents are able to be the heroes their children are counting on! Parents also receive the information about other systems they should access based on their child’s diagnosis and needs. Family Voices CO works at the policy level to ensure children with special health care needs have a voice. We listen to the challenges from the family perspective, tracking trends, in order to create systems change. We monitor policy activities to ensure families receive the services they need. Colorado’s health care systems – both public and private –are difficult for families to navigate . Family Voices CO understands both the private and public health systems. They also understand how the systems can work together. Through working with Family Voices CO, parents are supported and empowered , resulting in stronger families and an increased ability to advocate effectively on behalf of their children. Families of children with special healthcare needs often access multiple systems. Consequently, they experience the system barriers more quickly. Family Voices CO collaborates with the systems working to reduce the barriers through policy work and systems change. Family Voices CO promotes improved decision-making, better outcomes and higher quality services for all. F2F Heah info Center What is a Family-to-Family Information Center? Family-to-Family Health Information Centers (F2Fs) are family-led centers funded by the Health Resources and Services Administration (HRSA). There is one F2F in each state, in the District of Columbia, in five U.S. territories, and there are three F2Fs serving tribal communities. Family Voices Colorado is the Family-to-Family Health Information Center for the State of Colorado. Each F2F is staffed by highly-skilled, knowledgeable family members who have first-hand experience and understanding of the challenges faced by families of Children and Youth with Special Health Care Needs (CYSHCN). These uniquely qualified staff provide critical support to families caring for CYSHCN, particularly families of children with complex needs and those from diverse communities. F2Fs also assist providers, state and federal agencies, legislators, and other stakeholders to better understand and serve CYSHCN and their families. How do Family-to-Family Health Information Centers Help? How Do F2Fs Help Families? Each F2F provides free, 1:1 assistance to families, helping them: • Find appropriate care and services • Apply for Medicaid, CHIP, or private insurance • Get referrals to providers • Address insurance denials • Identify and access community support programs • Advocate to ensure effective and cost-efficient care • Connect with parent mentors How Do F2Fs Help Providers and Systems? F2Fs also work with health care professionals, hospitals, and public agencies to help them better meet the needs of CYSHCN and their families. They most often request assistance for: • Obtaining help for a patient/family • Addressing changes to state policies and programs • Learning about family experiences • Partnering to improve services Family Voices Colorado... Provides public awareness of the challenges and barriers of children and youth with special health care needs and their families Meet the Staff Meet the Team Megan Bowser Jill Hampton Administrator Juli Culver Director of Operations & Development Christy Blakely Senior Advisor Jamie Stefanski Family Navigator Executive Director Corinne DePersis Family Navigator Brenda Delgado Bilingual Family Navigator Kayleigh Sheble Family Navigator Maggie Kerzan Family Navigator Aubree McKinney Family Navigator Advisory Boar Family Voices Colorado Board of Directors Todd Blakely President Parent Member Attorney Cordelia (Corry) Robinson Rosenberg PhD, RN Treasurer Professor Pediatrics and Psychiatry Lance Wheeland Legislative Aide Justin Gutierrez Parent Member VP of Home Health Agency Benny Mudiar Parent Member Professor Heidi Haines Rocky Mountain Down Syndrome Association Jim Brennan Parent Member Film Maker

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Medicaid Buy-in Medicaid Buy-In for Children with Disabilities What is the Children’s Me dicaid Buy-In? The Health First Colorado Buy-In Program for Children with Disabilities allows families who make too much to qualify for Health First Colorado (Colorado’s Medicaid Program)and Child Health Plan Plus (CHP+) to “buy into” Health First Colorado coverage for their child with a disability by paying a monthly premium based on the family’s income. Who Qualifies? Children age 19 and under, with a qualifying disability per the Social Security Administration (SSA) A determination of disability by the SSA is accepted as proof of disability Children not certified through the SSA can still be determined disabled by the State by completing the Health First Colorado Disability application Family income must be below 300% of Federal Poverty Level (FPL), after income disregards are calculated The Children’s Buy-In may be an option for: Families of children with disabilities who are over income or resources for other Medicaid programs or CHP+; children on a waitlist for a children’s waiver (other than the C-HCBS waiver; contact us to learn more about this); children who do not qualify for waiver services; children who do not have health insurance or who need coverage as a wrap-around to other insurance. Learn More: Read the full overview and Frequently Asked Questions from the Department of Health Care Policy and Financing (HCPF). Visit HCPF’s page about the Children’s Buy-In for all the details. Apply: Download the Medicaid Application for Medical Assistance and the Medicaid Disability Application (both are required). Apply online through the Program Eligibility and Application Kit (PEAK) . Note that you will also need to complete and submit the disability application, linked above, on paper rather than online.buy in premium chart