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

Community First Choice And other upcoming Changes Community First Choice Toolkit View Download CFC for Waiver Members Info Sheets Children's Waivers Adult Waivers Recorded Q&A Sessions View Download Slides

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 Executive Director Kayleigh Sheble Colorado Springs Family Navigator Corinne DePersis Family Navigation Program Manager Jill Hampton Intake and Administration Jennifer Muñoz Bilingual Family Navigator Kate Broderick Adult and Transition Family Navigator Kaitlin Spraktes Family Navigator Kristin Soderberg Family Navigator Morgan Kennedy 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 Ann Reynolds Family Member Professor, Pediatrician Heidi Haines Rocky Mountain Down Syndrome Association Jim Brennan Nate Wertz Parent Member Film Maker Heroes Club Sarah Grazier Parent Member Colorado DD Council Katie Wallat Attorney Colorado Center on Law and Policy

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)

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 .

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 303-877-1747 Fill out our New Client Intake Form General Inquiries First name* Last name Email* Phone Write a message File upload Upload File Submit

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

Next: Preparing for CFC

Opportunities to Partner Together At Family Voices Colorado, our commitment to supporting families of children and youth with special health care needs has never wavered. Historically, we’ve offered many of our workshops and consultations at minimal or no cost thanks to philanthropic and public funding. However, like many nonprofits, we are navigating a time of significant funding uncertainty. We remain committed to never charging families for the services we provide them. However, to sustain the high-quality, responsive, and family-centered training and technical assistance that our partners have come to rely on, we are now implementing modest fees for some services to professionals. These fees help ensure that we can continue to invest in our staff, maintain up-to-date information on rapidly changing systems, and meet the growing need for support across Colorado. We deeply value the opportunity to collaborate with organizations that share our vision. Your financial investment in our work directly helps us reach more families and ensures they receive the guidance, tools, and advocacy they deserve. Thank you for partnering with us to empower Colorado families and strengthen the systems that serve them. Services for our Professional Partners Workshops and Consultation Services Family Voices Colorado (FVCO) provides customized training, presentations, and consultative technical assistance across Colorado on topics including: Medicaid/CHP+ & Private Insurance Navigation Home and Community-Based Services (HCBS) Waivers Community First Choice Early, Periodic, Screening, Diagnostic, and Treatment (EPSDT) Family Leadership & Advocacy Navigating Systems of Care for CYSHCN (Children and Youth with Special Health Care Needs) Disability Transition Planning Inclusive Practices in Healthcare, Education, and Human Services Building sustainable family advisory groups Navigating Medicaid policy updates (CFC, waivers, EPSDT, etc.) Training and onboarding staff to better serve CYSHCN Family engagement strategy audits and More! We offer both virtual and in-person formats (travel fees may apply). Contract a Dedicated Family Navigator Looking to provide more consistent, hands-on support to the families you serve? Family Voices Colorado offers the option for agencies, healthcare providers, school districts, and other partners to contract a dedicated FVCO Family Navigator. This model brings a trained and supervised member of our team to work directly with your population offering in person and virtual individual family navigation, assistance with system coordination (e.g., Medicaid, waivers, disability systems, insurance appeals, etc), and trainings and support tailored to your agency/organization’s needs. A Dedicated Navigator Can: Serve as a liaison between your agency and the families you support Help families understand and access the services and benefits they qualify for Provide one-on-one support to families navigating complex medical, behavioral, educational, or disability-related systems Contribute to care team meetings, resource fairs, or other family engagement efforts Share up-to-date policy information on Medicaid, Home and Community-Based Services, and more Connect your agency with broader advocacy and systems-change efforts in Colorado Each Navigator is supervised by FVCO leadership, trained in disability-competent practices, provided ongoing training on the ever changing Medicaid and disability systems, and provided ongoing support to ensure quality and consistency. If your organization is interested in exploring this model, we would love to meet with you to design a contract that fits your goals and budget. This is one of the most impactful ways to build long-term capacity to support families in your community. Learn More To discuss further, reach out at megan@familyvoicesco.org or (720) 853-8442

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

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