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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

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

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

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

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 .

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

What We Do Learn about the services we provide to families Navigation Family Voices Colorado understands both the private and public health care and disability systems from both a family experience and professional perspective. Whether you need help identifying resources or programs, moving beyond red tape through an appeal or grievance process, or accessing additional funding sources to pay for needed therapies, procedures, or equipment, we can provide the information and navigation you need to get answers to your questions. We work with families, health care providers, professionals and community systems to make sure children with special health care needs have access to the care and the support they need to live life to the fullest. Call us today if you need help navigating public or private health insurance, primary care or medical specialists, HCBS (Home and Community Based Service) Waivers, Early Intervention, school-based services, Community Centered Boards, guardianship issues, transition from pediatric to adult health care services, or other related systems. Client Intake Form Contact Us Navigato Education & Training We offer training for families, professionals and others on a range of topics, including: Medicaid 101 (HCBS) Home and Community Based Service Waivers -Children & Adults Private and Public Insurance Appeals Medical Home Model of Care Family Engagement Funding Navigating Systems of Care Training can also be customized to suit the needs of the group or organization. Call us today if your agency, medical practice, family support group, professional association, or other organization would like to schedule training. Client Intake Form Contact Us Educatio & Trainig Advocacy and Policy Family Voices Colorado speaks on behalf of children and youth with special health care needs, their families, and the professionals who work with them at the policy level. Family Voices CO listens to families and understands the challenges they experience. We track trends and identify barriers in systems, then we create systems level change. We gather family stories to share with state legislators and other decision-makers about how proposed laws or regulations are likely to affect the young people and families we serve, and we collaborate with other advocacy organizations to inform and mobilize the public. We regularly partner with the ARCs, Colorado Center on Law and Policy, Colorado Consumer Health Initiative, Colorado Coalition for the Medically Underserved, Colorado Cross-Disability Coalition, Community Centered Boards, Covering Kids & Families, and liaisons at the Departments of Health Care Policy and Financing and Public Health and Colorado Department of Health and Environment to work for policy changes that to improve systems and services for Children and Youth with Special Health Care Needs. Call us today if you would like to share your story or volunteer with us to make Colorado a better place for children and youth with special health care needs: 303-877-1747 Client Intake Form Contact Us Advocacy & Policy

Medicaid waivers Home and Community-Based Services Waivers What are Medicaid Waivers? A Home and Community-Based Services (HCBS) waiver is an extra set of Health First Colorado (Colorado's Medicaid program) benefits that you could qualify for in certain cases. These benefits can help you remain in your home and community. Learn More: General Info on HCBS Waivers Adult Waivers Children's Waivers Flowchart for choosing a Children's Waiver Children's Waivers (Spanish) Flowchart for choosing an Adult Waiver

Explore Resources Fast Facts FAST FACTS - Medicaid Agencies Colorado Agencies & Resources Disability Specific Organizations Family Voices Affiliates Health Coverage HCBS Medicaid Waivers Medicaid Buy-in Connect for Health Life Stages Transition Guides Navigating Healthcare Transitions Transition Guide by Life Domain Transition Guide by Age

Support our cause Learn how you can help VOLUNTEER Contact us to learn about volunteer opportunities with Family Voices Colorado DONATE We depend on our donors to be able to serve our community. Help us on our important mission SHARE YOUR STORY We would be honored to share your story with our community. Contact us if you are interested. No Cuts

Find more help Agencies & Resource Organizations Colorado Agencies & Resources Disability-Specific Orgs Colorado Agencies and Resources Ability Connection Colorado www.abilityconnectioncolorado.org Contact: 303-691-9339 Matching parents one on one with each other for support. They connect families of children and adults with special needs by either phone, computer or in person. The Arc of Colorado : www.thearcofco.org Contact: 800-333-7690 The Arc builds better lives for persons with intellectual and developmental disabilities and their families by improving connections to schools, work and the community. Can provide an advocate to assist families through the IEP process. Assistive Technology Partners : Contact: 303-315-1284 ATP assists persons with cognitive, sensory, and/or physical disabilities reach their highest potential at home, school, work and play through the addition of appropriate assistive technologies to their lives. Child Find / Early Intervention Colorado https://cdec.colorado.gov/ Contact: 888-777-4041 Colorado has a Child Find system for appropriately identifying infants and toddlers with developmental delays or disabilities, and timelines for making referrals to local early intervention programs at no cost to parents. Community-Centered Boards (CCBs) Colorado has 20 CCB organizations serving children and adults with developmental disabilities. They determine eligibility for community-based services and provide case management services. CCB’s also assist individuals with gaining access to Medicaid Waivers. Waiver programs provide additional Medicaid benefits to individuals with special needs. Colorado Center on Law and Policy (CCLP) Contact: 303-573-5669 The Colorado Center on Law and Policy (CCLP) works to promote justice, economic security, access to health care, and sound fiscal policies for the people or Colorado through advocacy, litigation, education, and research. Colorado Health Care Policy & Financing (HCPF): Contact: 303-866-2993 Provides access to cost-effective, quality health care services. The Department administers the Medicaid and Child Health Plan Plus programs as well as a variety of other programs for Colorado’s low-income families, the elderly, and persons with disabilities. Colorado Home and Community Based Service Waivers (Medicaid): Medicaid is a health care program for low income Coloradans. Applicants must meet eligibility criteria for one of the Medicaid Program categories in order to qualify for benefits. Major program categories include Aid to Families with Dependent Children/Medicaid Only, Colorado Works/TANF (Temporary Assistance for Needy Families), Baby Care/Kids Care, Aid to the Needy Disabled, Aid to the Blind, and Old Age Pension. For more information on Medicaid Waivers: Choosing an HCBS Waiver for Children Children’s Waivers Choosing an HCBS Waiver for Adults Adult Waivers Colorado Respite Coalition (CRC): Contact: 303-619-1437 CRC is community partners who explore, connect, and support community organizations and individuals interested in creating a variety of respite programs. Disability Law Colorado : Contact: 303-722-0300 Specialize in civil rights and discrimination issues. They protect the human and legal rights of people with mental and physical disabilities throughout Colorado. Easter Seals Colorado : Contact: 303-233-1666 Easter Seals is dedicated to supporting people with disabilities and their families as they live, learn, work and play in their communities. El Grupo VIDA : Contact: 303-335-9875 Provides information, referrals, and support for Spanish speaking parents. Ombudsman (Medicaid): 877-435-7123 email: help123@maximus.com Ombudsman help solve problems with your health care issues (both physical and mental health) for Medicaid Managed Care patients. They also help with health care rights and with grievances and appeals. Health Care Program for Children with Special Needs (HCP): Contact: 303-692-2370 HCP offers support for families with children with special needs and focuses on care coordination and providing specialty clinics throughout the state of Colorado. HCP services are available to children with special needs, regardless of insurance status or family income. Healthy Communities, Colorado Department of Health Care Policy and Financing: Contact: 303-866-2267 Healthy Communities combines aspects of the Early Periodic Screening Diagnostic and Treatment (EPSDT) outreach and administrative case management program and Child Health Plan Plus (CHP+) outreach into one model that better meets the needs of clients. This outreach and case management model takes into account that many families have one child enrolled in Medicaid while another is enrolled in CHP+. The distinction between Medicaid and CHP+ benefits and services isn’t always clear. Family Health Coordinators are available statewide to help Colorado Medicaid and CHP+ families through the Healthy Communities program. CLICK HERE TO READ MORE ABOUT HEALTHY COMMUNITIES JFK Partners : Contact: 303-742-5266 JFK promotes the independence, inclusion, contribution, health and well-being of people with special needs, through consumer, community, and university partnerships. PEAK Parent Center : Colorado’s Parent Training & Info Center (PTI): Contact: 800-284-0251 Provides information about all types of disabilities, training on a variety of topics and technical assistance on your child’s IEP. Show and Tell: Contact: 303-632-6840 Show and Tell empowers low-income, culturally diverse families to be advocates for their children with disabilities to achieve success in their schools and communities. Single Entry Point (SEP) : Single Entry Point (SEP) Agencies provide case management, care planning, and make referrals to other resources for clients with the following qualifying needs: elderly, blind and disabled, mental health, persons living with AIDS, brain injury, spinal cord injury, children with a life-limiting illness, children with a physical disability. Coloado Agencies & Resources Disabiliy spcific Org Disability-Specific Organizations Ability Connection Colorado : Contact: 303-691-9339 Autism Society of Colorado : Contact: 866-733-0794 Brain Injury Association of Colorado : Contact: 800-955-2443 Colorado School for the Deaf and Blind : Contact: 719-578-2100 EMPOWER Colorado : Contact: 866-213-4631 EMPOWER offers support, education, advocacy and resources to families with children and youth who have social, emotional or mental health challenges. Epilepsy Foundation of Colorado : Contact: 888-378-9779 Federation of Families for Children’s Mental Health | Colorado Chapter: Contact: 888-569-7500 Learning Disability Association of Colorado : Contact: 303-894-0992 Mile High Down Syndrome Association : Contact: 303-797-1699 NAMI (National Alliance for the Mentally Ill) Colorado : Contact: 888-566-6264 National Organization for Rare Disorders : Contact: 800-999-6673 Unique (Rare Chromosome Disorder Support Group)