Below you will find a number of different links to resources that may help in navigating transition from the birth to adult timespan, for yourself or loved one.

Colorado Genetics Navigator

Colorado Genetic Connections Facebook Group

Mountain States Regional Genetics Network (MSRGN) Home

MSRGN Colorado State Team Page

MSRGN Facebook

MSRGN Twitter

Emergency/poison control/abuse/domestic violence/crisis/suicide prevention Support/advocacy organizations & other resources

Explore these resources if: 

  • You need support and would like to connect with others with similar circumstances/diagnoses 
  • You would like to learn more about being an advocate for your child or family member
  • You would like to connect with national, regional or state agencies or advocacy organizations

Colorado Organizations

Family Voices Colorado

Ability Connection Colorado

Parent to Parent Colorado

The ARC Colorado

Disability Law Colorado

El Grupo Vida

Colorado Parent Guide

Colorado Talking Book Library

Together Against Bullying › Friends Colorado

Department of Public Health & Environment

Colorado Department of Health Care Policy & Financing

Children’s Hospital Colorado | Children’s Hospital Colorado

Kid’s Hospital & ER | Rocky Mountain Hospital for Children

The Denver Hospice

Health Care Program for Children with Special Needs

Ronald McDonald House of Denver

Aging and Disability Resource Center | DRCOG

Special Needs Resource Project- Special Needs Resource Project: COLORADO Resource Links

JFK Partners University of Colorado Anschutz

The Thrive Center

Medical equipment lending- Denver

Colorado Cross-Disability Coalition

Center for People With Disabilities

GoodHealthWill – Healthcare Supplies

National Organizations

HRSA – Children and Youth with Special Health Care Needs (CYSHCN)

March of Dimes


National Federation of Families

Child and Adolescent Health Measurement Initiative (CAHMI)

Healthy Children – AAP Parenting Website

CDC – Learn the Signs Act Early Milestones

Learn the Signs Act Early State Ambassadors

Learn the Signs Act Early- Questions to Ask

AAP Directory for Pediatricians

American Board of Family Medicine

Find a Federally Qualified Health Center (FQHC)

Medical Home Portal

AAP Medical Home Technical Assistance Center

American Academy of Family Physicians

American Academy of Pediatrics

Association of Maternal and Child Health Programs

Association of State and Territorial Health Officials

Association of Women’s Health, Obstetrics, and Neonatal Nurses

Child Neurology Society

National Coordinating Center for Regional Genetics Networks Resource Repository

National Library of Medicine (including PubMed)

National Institute of Child Health and Human Development (NICHD)

Special Kids

Courageous Parents Network

Kepro: Medicare Quality Improvement Organization

Family Caregiver Alliance

National Parent Helpline  1-855-427-2736

Center for the Prevention of Youth Violence – Johns Hopkins Bloomberg School of Public Health

CYSHCNET: Children and Youth with Special Health Care Needs National Research Network

AUCD: Association of University Centers on Disabilities

Self-Advocacy: Strategies for All Ages – Smart Kids

Social Security Administration (SSA)

Contact if: 

  • You need to apply for disability benefits 
  • You need to manage your social security benefits 
  • For information regarding general SSI benefits and regulations 

The SSI/SSDI program pays benefits to adults and children who meet requirements for a qualifying disability and have limited income resources.

How to tell if your child is eligible for disability benefits

US Social Security Administration Website

English site

Spanish site

English list of benefits for children with disabilities


Contact if: 

  • You need to apply for Colorado Medicaid programs 
  • You need contact your county Department of Human Services to request support
  • You have questions about what services are available for your child

Entitlement programs are government programs that guarantee certain benefits to a particular group. 

Colorado Department of Health Care Policy & Financing

Application for Health First Colorado and Child Health Plan Plus

Colorado Department of Human Services

Contact your County Human Services Department

Entitlement programs

Colorado PEAK Benefit Information

Colorado PEAK Log-In or Apply for Benefits

Benefit Finder

Overview of Premium Assistance/Reimbursement Programs

State Health Access Data Assistance Center

Caregiver Support Site

Adult Financial Programs | Colorado Department of Human Services

Supplemental Nutrition Assistance Program (SNAP) | Colorado Department of Human Services

Non-entitlement Services (residential or community living supports, employment supports, day or vocational supports, habilitation, transportation services, family support, assistive technology (AT), peer support, and mentors)

Community Development Block Grant (CDBG) | Department of Local Affairs

Find Your Parent Center | Center for Parent Information and Resources

Community Center Board (CCB) or Single Entry Point (SEP)

Contact this group if:

  • You need to find your Community Center Board for support
  • You need to contact Single Entry Point Agency to apply for benefits and access to resources 
  • You need to apply for a Medicaid waiver based on your child’s physical or developmental disability

Medicaid Waivers provide access to federal and state programs and health benefits for individuals who meet eligibility requirements but waive some requirements required by traditional Medicaid.

Find your local Community Center Board (waivers, FSBT, Mill Levy) or Single Entry Point (waivers) to Apply for Waivers, Grants (FSBT), and Other Funding (Mill Levy)

Community Centered Boards (CCB) | Colorado Department of Health Care Policy & Financing

Single Entry Point Agencies (SEP) | Colorado Department of Health Care Policy & Financing

Waivers for children Waivers for adults

Contact this group if/when:

  • You need information regarding the different adult waivers offered in Colorado
  • You need to complete a Supports Intensity Scale (SIS) assessment 
  • You need information on how to contact your Community Center Board (CCB) & Single Entry Point (SEP)

Some waivers may have waiting lists which is why it is important to begin applying earlier than is needed to assure your child will have continual coverage from a child waiver to an adult waiver.

State Medicaid Waiver List

Parent Led Transition Cadre

Choosing an HCBS Waiver for Adults

Colorado Programs for Individuals with Physical or Developmental Disabilities 

Colorado Home and Community-Based Service Waivers

Colorado Disability Benefits 101

Colorado Home and Community-Based (HCBS) Adult Waivers 

Supports Intensity Scale – Adult Version(SIS-A)

Supports Intensity Scale (SIS) Assessment Guides and Tools (Colorado) 

SIS-A aaidd 


Community Centered Boards | Colorado Department of Health Care Policy & Financing

Single Entry Point Agencies | Colorado Department of Health Care Policy & Financing

Early childhood milestones

Contact if: 

  • You have concerns regarding your child’s development (speech, physical, fine motor, etc)
  • You need to know if your child’s development is where is should be for their age
  • You need suggestions on how to help work on your child’s development at home

Early Intervention Colorado

CDC Learn the Signs, Act Early

ColoradoABCD – Assuring Better Child Health

CDC Milestone Tracker App

ECPC Home | The Early Childhood Personnel Center

Family Friendly Referral Guide

AAP’s Developmental Surveillance and Screening


Contact if: 

  • You need to set up long term care for an adult child (18+) with a disability
  • You need hospice or palliative care 

Aging and Disability Resource Center | DRCOG

Aging & Disability Resource Center (ADRC) Colorado

The Denver Hospice

Education/transition/early intervention

Explore these resources if: 

  • You need to understand your rights in regard to obtaining services through your local school district
  • You need support/resources on how to set up a health plan, 504 or IEP for your child
  • You need an agency or attorney to assist in resolving an issue with your child’s education

Colorado Department of Educations- Parents and Families of a child with a Disability

The ARC Colorado – Family Resources

US Department of Education

US Department of Education – IDEA site

Wrights Law

School Nursing and Health – Health Conditions & Care Plans | CDE

Special Education Advisory Committee (SEAC)
Parent, School & Community Liaison- David Ramer, Program Assistant
Phone: (303) 866-6943

Parents Encouraging Parents (PEP) | CDE

Find Your Special Education Director in Colorado | CDE

Office of Special Education | CDE

Developing Your Child’s IEP 

10 Steps in the Special Education Process

Disability Law Colorado – English

Disability Law Colorado – Spanish

PEAK Parent Center

Colorado Dept. of Education – Home School Resources

Resource Packet for Families New to Education Services (Boulder Valley School District)

Dispute Resolution Guidance

Individuals with Disabilities Education Act

Supporting Emotional Needs of the Gifted (SENG)

Colorado Association for Gifted and Talented (CAGT)

Find Your Parent Center | Center for Parent Information and Resources

Center for Appropriate Dispute Resolution in Special Education

Colorado Department of Education Parent and Family resources

Genetic Education Materials for School Success

Colorado READ Act | CDE

Resources – Individualized Education Program (IEP) | CDE

Related Services | CDE

Colorado IEP Forms | CDE

Understood – Mission for Learning Differences and Disabilities

Early Intervention

Early Intervention- Sorted by States

Early Intervention Colorado


Find your local Child Find/Special Education Preschool contact

Print the Colorado Preschool Program (CPP) Handbook

Colorado Preschool Special Education Services


Family and Community Guide for Kindergarten

Transitions to Kindergarten Resources | CDE

Adult Transition

BVSD Transition Planning

Students with Disabilities Graduation Guidelines – Colorado Dept. of Education

Educational Transition for Students with Neurological Conditions

Secondary Transition Professional Development | CDE

Employment/college/vocational training/adult training Medical Transition- from Pediatric to Adult Medical Care

Explore these resources if: 

  • You need to transition your child’s care from a pediatric medical provider (Pediatrician) to an adult primary care provider (PCP).
  • You need to transition you child’s care from a pediatric specialty provider to an adult specialist. 

Got Transition®

Neurology Transition of Medical Care Toolkit

Neurology Transition of Medical Care Toolkit Spanish

Passport to Good Healthcare

Guardianship and Decision Making Medicare eligibility

Contact if: 

  • You are 65 years or older, or you are under 65 and are permanently disabled and receive disability benefits
  • You need Medicare plan options for Colorado state
  • Your child is over the age of 20 and has been receiving SSDI for at least two years, or your child is under 20 and has End-Stage Renal Disease (ESRD)

Colorado Medicare Eligibility

Health and Human Services Medicare page

Financial planning

Explore these resources if: 

  • You need support to set up a special needs trust or ABLE account
  • You are looking for a qualified financial planner or attorney

Special Needs Trust information

Certified Financial Planner Board of Standards, Inc.

The American College of Financial Services for a Chartered Special Needs Consultant®- The American College of Financial Services

The Academy of Special Needs Planners (for an attorney or financial planner)

The Special Needs Alliance (for an attorney)

The Financial Planning Association (for a financial planner)

Learn What to Expect from a Financial Professional

Colorado Fund for People with Disabilities

Research tools to check broker Background and Experience

Financial Industry Regulatory Authority

Investment Advisor Public Disclosure

ColoradoABLE Financial Saving Assistance

Colorado Able Website

TheArc Center for Future Planning

Resources for Financial Planning

ABLE Account Guide

How to Save Money


Contact if: 

  • You need to understand your rights under laws protecting individuals with disabilities 
  • You need the support of an attorney specializing in disability law
  • You need support/advice from advocates pertaining to circumstances of your adult child with a disability

The National Academy of Elder Law Attorneys (NAELA)

Disability Law Colorado – English

Disability Law Colorado – Spanish

National Disability Rights Network – P&A – CAP | NDRN

Council of Parent Attorneys and Advocates – COPAA

Wills, Letters of Intent (LOI), and life course planning resources

Explore these resources if: 

  • You need information regarding end of life planning to ensure your child is protected and cared for in your absence
  • You are looking for programs/assistance in setting up trust funds for your child (Important if your child has access to government programs which may have income requirements. For example: In the event of both parents passing, your life insurance payment to your child may disqualify them from programs unless it is placed in a protected trust).

Advanced Care Planning and Living Will 

Will and testament

PLAN, Inc : Planned Lifetime Assistance Network


Sibling Leadership Network (SLN)

Academy of Special Needs Planners

Special Needs Alliance

Charting the Life Course

The Arc- The Arc | For People With Intellectual & Developmental Disabilities

Colorado ID and Disability Placard

Contact if: 

  • You need to know what supporting documents are needed to obtain a Colorado state ID
  • You need to make an appointment at your local DMV
  • You would like to know the different options of identification available in Colorado
  • You would like to obtain a disability placard

Colorado DMV Identification Cards

Drivers Information and Guidelines | Department of Revenue – Division of Motor Vehicles

Colorado License, Permit, and ID Card Checklist

Colorado Driver/Passenger with Disabilities Guide | Department of Revenue – Motor Vehicle

Living arrangements Assistive technology

Contact if: 

  • You need support finding or acquiring assistive technology for your child with a disability
  • You need access to assistive technology to help your child with a disability lead a more independent life

Assistive Technology is an item, piece of equipment, software program, or product that is used to increase, maintain or improve the daily living circumstances with a person with a disability.

Assistive Technology Center AT3 – AT3 Center

Assistive Technology Program of Colorado

State Wide Assistive Technology Augmentative & Alternative


Explore these resources if: 

  • Your child needs a wheelchair or other support equipment to aid in daily living
  • You need help finding fun, safe toys for your child 
  • You are in need of special equipment that will adapt to your child’s needs  

Kids Mobility Network

Santa’s Little Hackers – Toy drive and augmentations

Recreation and leisure

Explore these resources if: 

  • You want your child to participate in fun, safe activities regardless of their disability
  • You need programs/sports aimed at supporting individuals with disabilities 

Wilderness on Wheels

Disabled Sports USA – Move United

Colorado Special Olympics

Miracle League Metro Denver | Colorado | Sports Made Possible

TOPSoccer Program Overview — CSA

iCan Bike Hosts – iCan Shine, Inc.

National Sports Center for the Disabled

Colorado Discover Ability

Behavioral and mental health Childcare/Respite/Personal Assistive Services Insurance (health, property, disability, long-term care, life)

Explore these resources if: 

  • You need information regarding types of insurance and its benefits
  • You need to contact the Commissioner of Colorado’s Division of Insurance
  • -You need to file a complaint with the Commissioner regarding an insurance company or agent

National Association of Insurance Commissioners (NAIC)

Emergency preparedness Transportation Newborn Screening (NBS)

Contact if: 

  • You need NBS (newborn screening) results
  • Your doctor has told you your child has a positive newborn screen, and you are having trouble seeing a specialist/follow-up
  • To get lab reports for proof of condition when applying for SSI and Medicaid
  • For assistance with medical records

*Having all your child’s medical records is very useful as doctors and clinics often want lab and medical records before seeing a child. It is especially useful if a family moves to another state and must reestablish care.

Newborn screening includes a series of screenings: Some examples include blood spot screening, pulse oximetry screening for critical congenital heart disease, and hearing screening.

***Note that there is more to screening than just the examples listed here. Newborn screening (NBS) is an interconnected system of organizations, programs, and experts who work together to make sure that caregivers and health professionals have the information they need to understand NBS and know where to find more information when needed.

Navigate NBS Booklet

English NBS Home

Spanish NBS Home

English NBS Brochure for Colorado

Spanish NBS Brochure for Colorado

Expecting Health

Baby’s First Test- Colorado NBS List

HRSA Newborn Screening Information

Federal Agencies

Centers for Disease Control and Prevention (CDC) Newborn Screening Portal

Advisory Committee on Heritable Diseases in Newborns and Children

Recommended Uniform Screening Panel (RUSP)

National Institutes of Health (NIH)

National Library of Medicine (NLM)

Professional and Medical Organizations

Newborn Screening Translational Research Network

ActSheets (guide & resources for healthcare providers)


Association of Public Health Laboratories (APHL)

APHL Statements on Newborn Screening

AWHONN Statement on Newborn Screening

NSGC Statement on Newborn Screening

SIMD Statement on Newborn Screening

Support/Advocacy Organizations

Screening Technologies and Research in Genetics (STAR-G)

Save Babies Through Screening Foundation

Genetic and Rare Disease Information Center

Support for Colorado NBS Conditions

National PKU Alliance

Organic Acidemia Association

Fatty Acid Oxidation (FOD) Support Group

Sickle Cell Disease Association of America

Homocystinuria Network (HCUNetwork)

The MAGIC Foundation

CAH Cares

Cystic Fibrosis Foundation

SCID Compass (Severe Combined Immune Deficiency)

National MPS Society

Association for Glycogen Storage Disorders

National Urea Cycle Disorders Foundation

Cure SMA