![Mountain States Genetics [logo]](https://www.mountainstatesgenetics.org/wp-content/themes/mountain-states/images/logo.png){kind=logo}
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 email – Coloradogenetic@gmail.com
Colorado Genetic Connections Facebook Group
Mountain States Regional Genetics Network (MSRGN) Home
MSRGN Colorado State Team Page
Emergency/poison control/abuse/domestic violence/crisis/suicide preventionExplore these resources if:
- You do not feel safe in your living situation
- You feel like you might hurt yourself or others
- You need emergency assistance
American Association of Poison Control Centers
Colorado Poison Control Center
Colorado Child Abuse and Neglect Hotline Reporting System | Colorado Department of Human Services
National Coalition Against Domestic Violence
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
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
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
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)
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)
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
National Coordinating Center for Regional Genetics Networks Resource Repository
National Library of Medicine (including PubMed)
National Institute of Child Health and Human Development (NICHD)
Kepro: Medicare Quality Improvement Organization
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
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
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
Overview of Premium Assistance/Reimbursement Programs
State Health Access Data Assistance Center
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
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
Contact if:
- You need the list of options for Medicaid waivers
- You need to understand qualification standards for a waiver and if your child qualifies
Programs for Individuals with Physical or Developmental Disabilities
Colorado Home and Community-Based Services (HCBS) Waivers: Children’s Waivers
Colorado – Children’s Medicaid Waiver
Children’s Habilitation and Residential Program (CHRP)-Deskguide-May 2020
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.
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)
CCB and SEP
Community Centered Boards | Colorado Department of Health Care Policy & Financing
Single Entry Point Agencies | Colorado Department of Health Care Policy & Financing
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
CDC Learn the Signs, Act Early
ColoradoABCD – Assuring Better Child Health
ECPC Home | The Early Childhood Personnel Center
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
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 – IDEA site
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 ramer_d@cde.state.co.us
Parents Encouraging Parents (PEP) | CDE
Find Your Special Education Director in Colorado | CDE
Office of Special Education | CDE
10 Steps in the Special Education Process
Disability Law Colorado – English
Disability Law Colorado – Spanish
Colorado Dept. of Education – Home School Resources
Resource Packet for Families New to Education Services (Boulder Valley School District)
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
Resources – Individualized Education Program (IEP) | CDE
Understood – Mission for Learning Differences and Disabilities
Early Intervention
Early Intervention- Sorted by States
Preschool
Find your local Child Find/Special Education Preschool contact
Print the Colorado Preschool Program (CPP) Handbook
Colorado Preschool Special Education Services
Kindergarten
Family and Community Guide for Kindergarten
Transitions to Kindergarten Resources | CDE
Adult Transition
Students with Disabilities Graduation Guidelines – Colorado Dept. of Education
Educational Transition for Students with Neurological Conditions
Explore these resources if:
- You need to find job opportunities that fit the individuals needs of an adult with a disability
- You need help obtaining training to enter a job field
- You need to understand your rights as an employee with a disability
Division of Vocational Rehabilitation
Employment/College/Vocational Training/Adult Training
Community and Work Participation Disparities for People with Disabilities
Employment Help for People with Disabilities
Vocational Rehabilitation for Young Adults
Transition Services Resources Colorado
U.S. Department of Labor Office of Disability Employment Policy Topics
Government JobCorps Training Program
US Colleges with Learning Disability Programs
Employment Rights
Employee Rights | U.S. Department of Labor
American with Disabilities Act (ADA) of 1990
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.
Neurology Transition of Medical Care Toolkit
Contact if:
- You need to understand the different options for legal support to care for an adult child with a disability
- You need to begin the process for legal support to care for an adult child with a disability
Guardianship Alliance of Colorado | Ability Connection Colorado
Colorado Guardian and Conservator Subcategory List
National Resource Center for Supported Decision Making
Colorado Fund for People with Disabilities – CFPD
Colorado Judicial Branch – Self Help – Guardianship for Adults – Detailed Instructions
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)
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 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
TheArc Center for Future Planning
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
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
PLAN, Inc : Planned Lifetime Assistance Network
Sibling Leadership Network (SLN)
Academy of Special Needs Planners
The Arc- The Arc | For People With Intellectual & Developmental Disabilities
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
Contact if:
- You need to find a living facility for your child with a disability
- You need to modify your current home to adapt with your child’s disability needs
- You need more information regarding different living options for an adult with a disability
Association for community living: ACLBoulder
Center for People with Disabilities
Colorado Centers for Independent Living
Assisted Living Options for People with Disabilities
Specialized Housing for People with Disabilities
National Council on Independent Living
US Department of Housing and Urban Development
Mercy Housing Affordable Housing Options
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
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
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
Disabled Sports USA – Move United
Miracle League Metro Denver | Colorado | Sports Made Possible
TOPSoccer Program Overview — CSA
iCan Bike Hosts – iCan Shine, Inc.
Explore these resources if:
- You or your child need mental health support
- You are worried about your child’s behavior and are looking for support
National Alliance on Mental Illness (NAMI)
Empower/Recovery Centers for Mental Health Self-advocacy – National Empowerment Center
National Association of State Mental Health Program Directors
National Association of County Behavioral Health and Developmental Disabilities Directors
Mental Health Partners Colorado
Contact if:
- You are interested in how you can get paid to be your adult child’s caregiver
- You need a trusted respite provider to care for your child
- You need to find childcare or day programs for your adult child with a disability
How to Get paid to be Your Adult Child’s Caregiver
Parents as their child’s Certified Nursing Aide (CNA) | Department of Public Health & Environment
In-Home Support Services (IHSS) | Colorado Department of Health Care Policy & Financing
Pediatric Personal Care Services | Colorado Department of Health Care Policy & Financing
ARCH National Respite Network and Resource Center
Community Residential Homes/IDD Group Homes | Department of Public Health & Environment
KidStreet, Aurora | Children’s Hospital Colorado
Megan’s Place – Wheat Ridge Colorado Respite for Kids with Developmental Disabilities, Ages 3-18
Child Care Assistance | Colorado Department of Human Services
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
Contact if:
- You need to make preparations for your child in case of an emergency
- You want more information about how your child can be supported in case of emergency
Emergency: 911
Poison Control: 1-800-222-1222
Colorado Poison Control Center
Emergency Preparedness for People with Disabilities
The Centers for Disease Control and Prevention: Emergency Preparedness
Food and Drug Administration: Colorado Departments: Health
Emergency Readiness: Build a Disaster Supply Kit
FEMA Office of Disability Integration and Coordination
Contact if:
- You need to find daily transportation for your child to pursue everyday functions
- You need transportation for an emergency medical need or trip
American Public Transportation Association-Colorado Transit Links
National Aging and Disability Transportation Center
National Center for Mobility Management
Request an Air Ambulance Medical Flight | Angel MedFlight
Veyo | Non-Emergency Medical Transportation
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.
English NBS Brochure for Colorado
Spanish NBS Brochure for Colorado
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
Fatty Acid Oxidation (FOD) Support Group
Sickle Cell Disease Association of America
Homocystinuria Network (HCUNetwork)
SCID Compass (Severe Combined Immune Deficiency)
Association for Glycogen Storage Disorders
