Resources

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

Easterseals

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

Medicaid

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.

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

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

Choosing an HBCS Waiver

Colorado – Children’s Medicaid Waiver

Children’s Habilitation and Residential Program (CHRP)-Deskguide-May 2020

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

CCB and SEP

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

Aging

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 ramer_d@cde.state.co.us

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

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

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

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

Youth and Transition Services

U.S. Department of Labor Office of Disability Employment Policy Topics

A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities

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

Americans with Disabilities Act of 1990 (Original Text) | U.S. Equal Employment Opportunity Commission (eeoc.gov)

Colorado Workforce Centers

Build with TACT (Teaching the Autism Community Trades)

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

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

Power of Attorney Explanation

5 Types of Power of Attorney

National Resource Center for Supported Decision Making

Colorado Fund for People with Disabilities – CFPD

Colorado Judicial Branch – Self Help – Guardianship for Adults – Detailed Instructions

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

Legal

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

SibShops®

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

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

Government Housing Help

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

Housing Choice Voucher Program

Atlantis Community, Inc. – Disability Living Advocates

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

Equipment

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

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

The National Child Traumatic Stress Network

National Institute of Mental Health

Childcare/Respite/Personal Assistive Services

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

Consumer-Directed Attendant Support Services (CDASS) | 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

Colorado Respite Coalition

Community Residential Homes/IDD Group Homes | Department of Public Health & Environment

Home and Community Based Services Waiver for Persons with Intellectual and Developmental Disabilities (HCBS-DD) | 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

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

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

Emergency Evacuation Preparedness: Taking Responsibility for Your Safety A Guide for People with Disabilities and Other Activity Limitations

The Centers for Disease Control and Prevention: Emergency Preparedness

The Red Cross

Food and Drug Administration: Colorado Departments: Health

Ready.gov

FEMA Basic Preparedness Guide

Emergency Readiness: Build a Disaster Supply Kit

FEMA Office of Disability Integration and Coordination

HHS Emergency Preparedness Resources

Colorado Emergency Preparedness and Response

Transportation

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

Via Mobility Services

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

Access-a-Ride | RTD – Denver

Veyo | Non-Emergency Medical Transportation

Miracle Flights – A Cure For Distance

Pilots For Patients

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