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General information

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Summer camps that are designed for children with disabilities, as well as whole family retreats.

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summer camp for kids with neurodevelopment disability

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Online medical supplies

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Disability awareness, specialized-care guidance for families, and financial resources.

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Sports, hiking trails, and fun activities

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Facebook groups and online community resources

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A retreat where families affected by disability will be encouraged, find hope, and engage in lots of fun activities

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A retreat for families affected by disability

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Retreats specifically focus on families navigating disability

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Joni & Friends Family Retreat June 16-20, 2025 and July 14-18, 2025
Accepting Applications Soon! Take me to Joni & Friends Camp Check Joni and Friends website for additional dates in July. Family Retreats specifically focus on families navigating the challenges of disability. We value each person as an image-bearer of God and worthy

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A summer day camp that provides recreational opportunities for children, adolescents, and young adults experiencing disabilities. Day-camps are held at the Jenkins Estate campus.

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Summer camp located near South Santiam River in Foster, Oregon for children with physical and cognitive disabilities.

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An accessible summer camp for families with children who experience physical and cognitive diagnoses.

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Hosts an adaptive sports focused recreational camp.

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Christian Camp/Conference Center with programs for youth, people with physical and/or cognitive disabilities, families with autism, and military families. We also integrate horses into all programs and offer trail rides and horse camps for youth.

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Online provider of catheters and ostomy supplies

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Find the right catheter supplies for you.

Search hundreds of intermittent catheters on 180 Medical's online catalog. Narrow your search by selecting product options like catheter brands, catheter types, sizes, or lengths. Need some help navigating your options? Contact our specialists to get started. We'll help you find the catheter supplies that best fit your unique needs.

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Catheter Supplies for Men, Women & Children | 180 Medical

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Looking for high-quality catheter supplies? 180 Medical offers personalized service, free shipping, & free samples for catheters.

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Offers a wide variety of medical supplies that can be ordered online.

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Byram Healthcare is a national leader in disposable medical supplies delivered directly to patient’s homes while conveniently billing insurance plans.

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Information, guidance, and training on the Americans with Disabilities Act. Organization is active on social media and holds live chats and events.

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Information, Guidance and Training on the Americans with Disabilities Act

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Association of support service Brokerage agencies that work to ensure high quality in-home and community based services to adult Oregonians with intellectual and developmental disabilities.

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United to promote self-determination for people with intellectual and developmental disabilities. We are an association of the 14 Support Service Brokerage agencies that provide case management to over 7,500 adults with intellectual and developmental disabilities (IDD) all across Oregon.

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Seeks to empower families of youth experiencing disability by increasing disability awareness, growing community, and equipping families. Offers many trainings and peer-to-peer support to help families navigate special education, assistive technology, behavior support, and transition to adulthood.

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FACT Oregon - Empowering families experiencing disability.

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FACT empowers Oregon families experiencing disability in their pursuit of a whole life by expanding awareness, growing community, and equipping families.

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Provides services, education, and advocacy to ensure that people with disabilities direct their own lives through supported living, housing access, employment connections, and assistive technology resources.

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Community Vision - Empowerment – Independence – Possibilities

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Latest Stories Find more of our latest stories about our work.

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The ODC is a Governer-appointed commission that links public and private organizations serving individuals with disabilities. Their purpose is to secure economic, social, legal, and political justice for people with disabilities. Can join their commission and attend their committee meetings.

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The ODC acts as a coordinating link between and among public and private organizations serving individuals with disabilities

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Oregon Center for Children & Youth with Special Health Needs 

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Oregon Center for Children & Youth with Special Health Needs 

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Informs and supports families and professionals who care for children and youth with special health needs. Families of the organizations participate in planning and implementing projects to improve the systems and policies in Oregon that impact these youth.

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Mission

OCCYSHN's mission is to improve the health, development and well-being of all Oregon's children and youth with special health needs.

Vision

OCCYSHN'svision is that all Oregon's children and youth with special health care needs are supported by a system of care that is family-centered, culturally competent, community-based, coordinated, accessible, comprehensive, and continuous.

Equity commitment

Because racism and other forms of discrimination affect health care for Oregon's children with special health needs and their families, we are committed to advancing health equity. Read our Equity Commitment.

Who we serve

OCCYSHN works on behalf of Oregon's children and youth with special health care needs (CYSHCN). These children and youth either have chronic health conditions, or they are at risk for having them. Their health conditions can be physical, developmental, behavioral, or emotional. CYSHCN need more health and related services than other children. One in five Oregon children fits this description.

We value your input

If you have comments or suggestions about how we can best serve Oregon's children and youth with special health care needs, please send us an email

READ: "All circuits ended": Family experiences of transitioning from pediatric to adult healthcare for young adults with medical complexity in Oregon (Shreya Roy et al.), Journal of Pediatric Nursing - June 2021. A paper authored by OCCYSHN staff and Family Leaders.

Mission

OCCYSHN's mission is to improve the health, development and well-being of all Oregon's children and youth with special health needs.

Vision

OCCYSHN'svision is that all Oregon's children and youth with special health care needs are supported by a system of care that is family-centered, culturally competent, community-based, coordinated, accessible, comprehensive, and continuous.

Equity commitment

Because racism and other forms of discrimination affect health care for Oregon's children with special health needs and their families, we are committed to advancing health equity. Read our Equity Commitment.

Who we serve

OCCYSHN works on behalf of Oregon's children and youth with special health care needs (CYSHCN). These children and youth either have chronic health conditions, or they are at risk for having them. Their health conditions can be physical, developmental, behavioral, or emotional. CYSHCN need more health and related services than other children. One in five Oregon children fits this description.

We value your input

If you have comments or suggestions about how we can best serve Oregon's children and youth with special health care needs, please send us an email

READ: "All circuits ended": Family experiences of transitioning from pediatric to adult healthcare for young adults with medical complexity in Oregon (Shreya Roy et al.), Journal of Pediatric Nursing - June 2021. A paper authored by OCCYSHN staff and Family Leaders.

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Oregon Center for Children and Youth with Special Health Needs | OHSU

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Mission OCCYSHN's mission is to improve the health, development and well-being of all Oregon's children and youth with special health needs. Vision OCCYSHN'svision is that all Oregon's children and youth with special health care needs are supported by a system of care that is family-centered, culturally competent, community-based, coordinated, accessible, comprehensive, and continuous.

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Helps Oregon residents with disabilities to save money for everyday needs, unexpected expenses, or for long-term goals.

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Skip to content

Oregon ABLE accounts offer financial independence, confidence, and peace of mind. We provide the tools you need to feel empowered about saving, while keeping the benefits you rely on every day.

For too long, people with disabilities could not save for the future out of fear of losing needed government benefits. The disability community fought long and hard to change this, and together we've come up with a solution.

An Oregon ABLE Savings Plan is a way to save for eligible expenses, invest for the future, and keep the benefits you rely on every day.

Learn about the program

Not an Oregon resident?

Check out the national ABLE for ALL Savings Plan

What qualifies as an eligible expense?

The money from the account can be used for everyday needs, unexpected expenses, or for long-term goals. The eligible expenses are geared towards improving health, independence, and quality of life, including:

Living expenses

Education

Housing

Transportation

Employment, training, and support

Personal support services

Find out more

What makes us special?

Our program is unique because it was created with the support of people with disabilities and those working with the disability community. We collaborate with nonprofit organizations and government agencies that focus on disability issues and champion our cause.

We established ways for people to get in-person assistance with in-state partners such as the Aging and Disability Resource Centers in Oregon in case they need additional support. Our support team goes above and beyond with intensive training to help empower beneficiaries with information provided in a way that is most useful for that person.

We're also the first ABLE program to partner with Vestwell State Savings, LLC, a program manager that offers a simple and intuitive online platform that helps people manage their ABLE accounts to reach their dreams.

Do you or someone you know live outside Oregon?

Check out the national ABLE for ALL Savings Plan

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Save for today and invest for a better tomorrow. - Oregon ABLE Savings Plan

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An Oregon ABLE Savings Plan is a way for people with disabilities to save for eligible expenses, invest for the future, and keep the benefits they rely on every day.

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Provides children and adults with physical disabilities many opportunities for recreation and competition through sports. They have many sports including cycling, archery, power soccer, swimming, and a variety of wheelchair sports.

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We provide children and adults with physical disabilities and visual impairments opportunities for health, recreation, and competition through sports.

Our programs endeavor to improve the quality of life for those experiencing disability.

Through sports and recreation, we are opening doors to healthy lifestyles and supporting the development of essential life skills including self-confidence, grit, and resiliency.

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Adaptive Sports Northwest - Providing adaptive sports and recreation opportunities in Oregon & SW Washington

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We provide children and adults with physical disabilities and visual impairments opportunities for health, recreation, and competition through sports. Our programs endeavor to improve the quality of life for those experiencing disability. Through sports and recreation, we are opening doors to healthy lifestyles and supporting the development of essential life skills including self-confidence, grit, and resiliency.

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Exclusively trains individuals with special needs to help make fitness fun and rewarding. Locations in Bend, Eugene, Portland, and Vancouver.

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Fitness for individuals with special needs.

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Little League’s adaptive baseball program for individuals (boys and girls) with physical and intellectual challenges.

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The Little League Challenger Program is Little League's adaptive baseball program for individuals with physical and intellectual challenges.

Who can participate in the Little League Challenger Program?

Any individual with a physical or intellectual challenge may participate. If an individual can participate in the traditional Little League Baseball or Softball program with reasonable accommodations they should do so. The Little League Challenger Division accommodates players ages 4-18, or up to age 22 if still enrolled in school. The Senior League Challenger Division accommodates players ages 15 and above (no maximum age).

Is there a cost to participate in the Challenger Program?

Each local Challenger Program sets its own policy with respect to registration fees. No player may be denied the opportunity to participate based on the inability to pay a registration fee.

What rules are followed during a Challenger game?

Flexibility and adaptability are key during Challenger games. Little League provides all chartered teams with a rulebook that includes a best practices guide to operating a Challenger Game. Typically games are 1-2 innings long and last about an hour. All players play defensively and bat every inning.

What are "buddies" and what role do they have in the Challenger Division?

Buddies are individuals who assist Challenger athletes in the areas of batting, base running and defense, but only as needed. Often buddies are peer athletes who are participating in the Little League Baseball or Softball program.
Game Play Guidelines for Buddies
What type of field are Challenger Games played on?

Challenger games may be played on a traditional or synthetic baseball or softball field. Little League encourages the use of traditional fields for the Challenger Program so that participants can enjoy playing on the same fields as other Little Leaguers in the community.

How many Challenger Programs are currently operating?

There are currently over 950 Challenger programs in 10 countries around the world. Over 30,000 athletes participate in the Challenger Division every year.

How can I start a Challenger Division in my league or community?

To request information about starting a Challenger Division in your community, click here.

How can I find a Challenger Division in my area?

To find a Challenger Division near your community, visit our League Finder or email us at challenger@LittleLeague.org.

How can I get involved with the Challenger Division?

There are many ways for everyone to get involved with the Challenger Division. For a listing of ways that you can get involved with the Challenger Division and make a difference, visit our Get Involved page.

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About the Challenger Division - Little League

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What is the Little League Challenger Program? The Little League Challenger Program is Little League's adaptive baseball program for individuals with physical and intellectual challenges. Who can participate in the Little League Challenger Program? Any individual with a physical or intellectual challenge may participate. If an individual can participate in the traditional Little League Baseball [...]

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Baseball program for youth and adults located in Vancouver, Washington.

Email: info@mlvw.org

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

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Oregon wheelchair rugby team for youth athletes with impairment in limbs.

Email: kipjohnson@myjonesrealtor.com

Phone: (971)-645-2019

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The Portland Pounders is Portland, Oregon's wheelchair rugby team. Also known as quad rubgy or murderball, players must have impairment in three limbs, and score tries with the ball by crossing the goal line. Full wheelchair contact, four-on-four, and 40 seconds to score, make for an action packed four quarters.

Whether you're interested in getting out on the court, cheering from the stands, or supporting the Portland Pounders, we have the opportunities for you.

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The Portland Pounders is Portland, Oregon's wheelchair rugby team. Also known as quad rubgy or murderball, players must have impairment in three limbs, and score tries with the ball by crossing the goal line. Full wheelchair contact, four-on-four, and 40 seconds to score, make for an action

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Portland committee that compiles information about hiking trails and outdoor facilities that would benefit hikers with disabilities. Includes informational videos and interactive online trail explorations.

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Search for the top-rated wheelchair accessible trails in Oregon.

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Oregon Wheelchair Accessible Trails & Trail Maps | TrailLink

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Explore the best wheelchair accessible trails in Oregon on TrailLink. View trail maps with detailed amenities, guidebook descriptions, reviews, photos, and directions.

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Portland Parks & Recreation Adaptive Recreation Program

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Portland Parks & Recreation Adaptive Recreation Program

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Offers community-based recreation activities and inclusion services for teens and adults who have a disability.

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Offering community-based recreation activities designed for teens and adults who have a disability.

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Website and Facebook group that provides information regarding bowel management.

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The unofficial guide to Bowel Management for Spina Bifida by and for parents and adults with SB.

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Facebook support group for people with Spina Bifida and their family caregivers.

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

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Facebook group building community to support families affected by Spina Bifida in Oregon and Southwest Washington

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Spina Bifida Association of Oregon. 760 likes. Building community to support families affected by Spina Bifida in throughout Oregon and SW Washington.

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Provides a variety of recreation activities and summer camps for individuals with disabilities. Participants can participate in a variety of snow sports, water sports, rock climbing, cycling, and yoga. Located in Washington.

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Welcome | Outdoors for All Foundation | Adaptive Recreation

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Welcome! Our mission is to enrich the quality of life for children and adults with disability through outdoor recreation. Learn more!

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Oregon Family to Family Information Center 

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Oregon Family to Family Information Center 

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Provides information to families navigating the complex world of health care needs, including insurance systems, financial assistance, and identifying emotional supports.

Phone: 1-855-323-6744

Email: contact@oregonfamilytofamily.org

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The Oregon Family to Family Health Information Center supports families and caregivers of children with special health needs when navigating complex health care systems. Staffed by parents of children and youth with a variety of health conditions, we provide free one-to-one support, training, and printed materials to families and professionals who serve them. This website houses hundreds of resources for parents, grandparents, and youth.

We do our best to keep this website current, but please let us know if you find any broken or outdated links.

To speak to an OR F2F HIC Parent Partner

Newsletters (English)

Oregon Family to Family HIC newsletter, news and resources you can use.

July 2023 Gearing Up for Healthy School Year, Parent Spotlight, Genetics Resource, Guide to Genetic Referrals,

June 2023 Genetics Journey, Parent Spotlight, Outdoor tips, Screen time tips, upcoming events

May 2023 Medical Stress, Parent Spotlight, cartoon, pool safety, upcoming events

September 2022 Cartoon, Equity for black youth, HERO- kids, Transition video, School health plans

July 2022 Oregon Kinship Navigator, ADA is 32, Healthier Oregon, Avoid summer sunburns

June 2022 Parent Spotlight, Paid family caregivers, Surprise medical bills being outlawed, Seizure study, Financial beginnings classes for youth

April 2022 Parent Spotlight, Neurology visit tool, Car seat selection, tube feeding risk, Assistive tech. lemon law

February 2022 Parent Spotlight, Table Talks, Internet discounts, AAP family blog, Community Partners Council

December 2021 Parent Spotlight, Who ya gonna call?, Get kids moving, Move to Oregon, Insurance help.

November 2021 Parent Spotlight, Service dogs, Smoothing Transition to Adult Healthcare, Join OR Commission on ASD, Supporting Siblings

October 2021 Parent spotlight, Right wheelchair tips, Resources for rare diseases, Right support for your young adult.

September 2021 Healthcare goals for IEP, Take care of yourself, coordinating your coordinators, Family Organization spotlight.

August 2021 Resources for every "condition", Family organization spotlight, Study of Oregon youth with complex medical conditions, Child tax credit.

July 2021 Moving from Pediatric to Adult Health Care, Parent spotlight, Oregon Kinship Navigator, Input to improve PT for children with cerebral palsy.

June 2021 Safe summer activities, Parent spotlight, Parent advocacy training, LEND fellowship, Emergency broadband program

May 2021 Successful hospital stays, Parent spotlight ,Table Talk, I/DD state council, Help with insurance premiums

April 2021 Covid Vaccines, Help for medical bills, Parent spotlight, Table Talks, Parents as paid, in-home providers, Legislative session

Please let us know if you would like to be on our mailing list for periodic newsletters

Newsletters (Spanish)

Our newest video: Black Children and Youth with Special Health Needs: Families Navigate Oregon's Broken Systems

The Oregon Family to Family Health Information Center supports families and caregivers of children with special health needs when navigating complex health care systems. Staffed by parents of children and youth with a variety of health conditions, we provide free one-to-one support, training, and printed materials to families and professionals who serve them. This website houses hundreds of resources for parents, grandparents, and youth.

We do our best to keep this website current, but please let us know if you find any broken or outdated links.

To speak to an OR F2F HIC Parent Partner

Newsletters (English)

Oregon Family to Family HIC newsletter, news and resources you can use.

July 2023 Gearing Up for Healthy School Year, Parent Spotlight, Genetics Resource, Guide to Genetic Referrals,

June 2023 Genetics Journey, Parent Spotlight, Outdoor tips, Screen time tips, upcoming events

May 2023 Medical Stress, Parent Spotlight, cartoon, pool safety, upcoming events

September 2022 Cartoon, Equity for black youth, HERO- kids, Transition video, School health plans

July 2022 Oregon Kinship Navigator, ADA is 32, Healthier Oregon, Avoid summer sunburns

June 2022 Parent Spotlight, Paid family caregivers, Surprise medical bills being outlawed, Seizure study, Financial beginnings classes for youth

April 2022 Parent Spotlight, Neurology visit tool, Car seat selection, tube feeding risk, Assistive tech. lemon law

February 2022 Parent Spotlight, Table Talks, Internet discounts, AAP family blog, Community Partners Council

December 2021 Parent Spotlight, Who ya gonna call?, Get kids moving, Move to Oregon, Insurance help.

November 2021 Parent Spotlight, Service dogs, Smoothing Transition to Adult Healthcare, Join OR Commission on ASD, Supporting Siblings

October 2021 Parent spotlight, Right wheelchair tips, Resources for rare diseases, Right support for your young adult.

September 2021 Healthcare goals for IEP, Take care of yourself, coordinating your coordinators, Family Organization spotlight.

August 2021 Resources for every "condition", Family organization spotlight, Study of Oregon youth with complex medical conditions, Child tax credit.

July 2021 Moving from Pediatric to Adult Health Care, Parent spotlight, Oregon Kinship Navigator, Input to improve PT for children with cerebral palsy.

June 2021 Safe summer activities, Parent spotlight, Parent advocacy training, LEND fellowship, Emergency broadband program

May 2021 Successful hospital stays, Parent spotlight ,Table Talk, I/DD state council, Help with insurance premiums

April 2021 Covid Vaccines, Help for medical bills, Parent spotlight, Table Talks, Parents as paid, in-home providers, Legislative session

Please let us know if you would like to be on our mailing list for periodic newsletters

Newsletters (Spanish)

Our newest video: Black Children and Youth with Special Health Needs: Families Navigate Oregon's Broken Systems

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We help families navigate the complex health care system and connect families from around Oregon to resources and support.

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This website is designed to help people with disabilities and their families and advocates learn about managing money.

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Provides a comprehensive, family office-style service, managing the intricate financial, legal, and strategic considerations that come with securing the best possible future for your child with an intellectual or developmental disability.

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Special Needs Financial Planning - Palladio Consulting LLC

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Special needs financial planning services for investment advisement, government benefits, taxes, estate design, settlements, retirement, and ABLE Accounts.

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Tips that encourage the development of Social Skills; Factors that hinder social development

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An article that explains the types of Spina Bifida, causes, and methods of treatment.

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By: Eliza Gordon-Lipkin, MD, FAAP & Paul Lipkin, MD, FAAP

Spina bifida, which affects the spine and spinal cord, is one of the most common birth defects in babies. In fact, it is the most common birth defect of the nervous system. About 1,400 babies are born with the condition in the United States each year.

What is spina bifida?

Spina bifida, which means "split spine," is a congenital abnormality that occurs before birth. It happens when the embryo's neural tube--which later becomes the brain and spinal cord-does not close all the way. This can prevent bones along the spine from forming properly, too.

In babies with spina bifida, part of the spinal column often bulges out on the back. The spinal cord and nerves also may be damaged. This can cause problems with movement, sensation and other body functions.

Are there are different types of spina bifida?

Yes, there are three major types of spina bifida:

Myelomeningocele: This is the most common and severe type of spina bifida. Babies with this type have part of the spinal cord sticking out of the back.(See "From Surviving to Thriving With Spina Bifida," below.)

Meningocele: In this type of spina bifida, a fluid-filled sack containing the structures that surround the spinal cord sticks out of the baby's back. The sack is sometimes covered by skin. In most cases, the spinal cord and nerves are normal or only mildly affected.

Occulta: This is sometimes called "hidden spina bifida." There is no opening in the back. The spinal cord and nerves are usually normal and there is only a small abnormality in the bones of the spine. Some people may never have problems from spina bifida occulta and may not realize they have it. Some people will have a small patch of hair on the lower back. However, in some people, the condition can cause back pain, leg weakness or bowel and bladder problems.

What causes spina bifida?

As with other types of neural tube defects (NTDs), doctors don't yet understand all of the causes of spina bifida. Both genetics and the environment likely play a role. Here's what else we know:

Parents of a child with spina bifida are at an increased risk of having a second child with a NTD.

Certain medical conditions in pregnant women, like diabetes, are associated with increased risk of having babies born with NTDs. Some medications also increase the risk of NTDs when taken during pregnancy.

Folic acid, a B vitamin, can help prevent NTDs when taken before and during pregnancy.

Spina bifida occurs during the first few weeks of pregnancy, often before the parent knows they are pregnant. That's why the American Academy of Pediatrics (AAP) supports the public health recommendation that all women who are able to become pregnant take 400 micrograms (mcg) per day of folic acid.

How do I know if my child has spina bifida?

Spina bifida may be diagnosed during pregnancy or after birth:

During pregnancy, several screening tests are done at regular prenatal visits that may identify a baby with spina bifida. These include a blood test, ultrasound and sometimes, amniocentesis, which tests the fluid that surrounds and protects a baby during pregnancy.

After birth, a newborn may be diagnosed with spina bifida when a doctor observes an abnormality somewhere along the spine. An ultrasound, x-ray, MRI (magnetic resonance imaging) or CT (computed tomography) scan may be used to get a clearer picture of the suspicious area.

Are there treatments available for spina bifida?

Yes, treatments are available for spina bifida both before and after the baby is born.

During pregnancy, prior to the birth of the baby: If spina bifida is identified during pregnancy, surgery on the baby may be performed in some patients. Many factors need to be considered when deciding whether or not a pregnant mother and baby should undergo this procedure. If eligible, the surgery should be done at a specialized hospital center experienced in fetal surgery.

After birth: For babies born with myelomingocele, surgery to close the back is usually recommended within the first two days of life. This surgery is necessary to prevent dangerous infections. However, the surgery does not reverse damage that may have already occurred to nerves of the spinal cord. Before and after surgery, babies with spina bifida are frequently cared for in the neonatal intensive care unit (NICU).

In addition to the care provided by a pediatrician, treatments for spina bifida requires a team of specialists. Team members may include neurosurgeons, orthopedic surgeons, urologists, rehabilitation experts, pediatric neurologists, developmental pediatricians, physical therapists, psychologists and social workers.

Paralysis (the loss of the ability to move). Because nerves leading to the lower part of the body can be damaged in children with spina bifida, the muscles in the legs may be very weak or paralyzed. Joints can also be very stiff. Many babies with this disorder are born with problems in the hips, knees and feet.

Surgery can help correct some of these problems. In addition, muscle weakness can be treated with physical therapy and special equipment such as braces and walkers. Many children with spina bifida eventually can stand and some can walk. The learning process is often long and challenging.

Hydrocephalus ("water on the brain"). Many children with spina bifida eventually develop this condition, caused by excess fluid around the brain. It occurs because the path where fluid usually flows is blocked in spina bifida. The higher up the abnormality is on the spine, the greater the risk is for hydrocephalus. This condition is serious and can be fatal.

Pediatricians may suspect hydrocephalus if the baby's head is growing faster than expected. The condition is confirmed by a CT scan or MRI. It is often treated with surgery to place shunt that drains excess fluid.

Chiari malformation. In addition, most children with spina bifida have crowding of parts of their brain into the spinal canal. This malformation is referred to as Chiari malformation. It's frequently diagnosed by CT scan or MRI. Some patients with Chiari malformation require surgery to take pressure off of the brain tissue.

Urinary tract & bowel problems. Damage to the nerves that control the bladder are more likely to develop urinary tract infections, which can damage the kidneys. Bowel control may also be a problem. Many medications or procedures can be used to treat these problems in people with spina bifida.

Infections. Children with spina bifida who also have hydrocephalus or urinary tract problems may be vulnerable to infection. Parents of children with these conditions need to watch carefully for signs of infection. Fortunately, the types of infections that can develop with these conditions usually can be treated effectively with antibiotics.

Orthopedic problems. Some orthopedic issues may be noted at birth but others may develop over time. Hip dislocation and scoliosis are common in children with spina bifida. Pediatricians, physical therapists and orthopedists work together to monitor for and treat these conditions and promote motor function.

Latex allergy. People with spina bifida have an increased risk of developing an allergy to latex. It is not known why. To help reduce a child's overall exposure to latex, parents can try to limit their baby's contact with products that contain latex (pacifiers, teething toys, changing pads, mattress covers, bandages and some diapers).

Learning & social challenges. Many children with spina bifida do well in school, although they may be more likely to have developmental and learning disabilities that can benefit from special education. Many also need psychological counseling and emotional support to cope with their health, learning, and social challenges. Children with mobility problems may need support services through the school system, as well.

Other concerns. Some children with spina bifida may have problems with their vision. Some may also have problems with sensation. In addition, about 10% to 15% of children with spina bifida also have seizure disorders (epilepsy). Sleep disordered breathing problems such as sleep apnea are also common.

What other challenges can people with spina bifida have?

From Surviving to Thriving With Spina Bifida

By: Melanie Dragovits

October 25 is World Spina Bifida Day. It is also the day that 18 years ago, I gave birth to our daughter, Elizabeth. Lizzy happens to have spina bifida. She was born with a myelomeningocele near the two bottom vertebrae of her spine.

The exposed spinal cord tissue on her lower back back was flat, covered with a thin membrane and shaped like a butterfly. Her very first surgery to close the open area of her spine happened immediately after delivery. It would be the first of many.

Lizzy was also born with hydrocephalus and needed shunt surgery to drain excess fluid around her brain. In addition, Chiari malformation was causing crowding of her brain stem. Our rosy-cheeked baby soon looked pale and needed ventilator support and tube feeding. She underwent a very delicate and risky surgery to decompress the back of her brain and brain stem, intended to revive her drive to breathe and other vital life functions.

Lizzy was able to come off the ventilator. However, she still needed a tracheostomy, a surgically created hole in her windpipe, to treat her narrow airway and sleep apnea. Once Lizzy was able to come home, we enlisted a team of home physical therapists, occupational therapists and speech therapists. They were miracle workers. The baby we were warned may not live and, if she did, would not walk, talk, or eat, was eventually doing all of those things!

Lizzy has grown into a spunky, happy, wonderful young woman adored by many. Throughout her school years she has tried and conquered many goals: swimming, cheerleading, dancing, horseback riding, public speaking, volunteering, getting straight A's, being an active member and leader of high school clubs, acting in a play, learning to drive and more.

One of her most prized accomplishments has been becoming a counselor-in-training for her beloved Camp Independence. She loves it because she gets to work with younger children who have spina bifida.

Today, Lizzy is a senior in high school with aspirations to be an early childhood educator specializing in special education. Before leaving for college, she plans to attend a transition program offered by our state. It helps teens with physical disabilities develop skills they need to transition to independent living.

Yes, Lizzy had a rocky and complex start to life. All that has happened shaped her into who she is today, and who I am. The experiences we shared on her journey with spina bifida has enriched our family in countless ways. We look forward to continuing to help others on their own personal spina bifida journey.

Melanie Dragovits is a mother of three and an advocate for individuals with spina bifida. She is also an educator working in the field of special education. She sits on the Family Advisory Board for Ann and Robert H. Lurie Children's Hospital's Spina Bifida Clinic in Chicago.

Remember

Good medical care can greatly improve the quality of life for children with spina bifida and help them reach their full potential.

More Information

About Dr. Gordon-Lipkin

Dr. Eliza Gordon-Lipkin, MD, FAAP, a candidate member of the American Academy of Pediatrics (AAP) Section on Neurology, is a child neurologist at the National Human Genome Research Institute within the National Institute of Health in Bethesda, Maryland. She has special expertise in neurodevelopmental disabilities and sees patients with a broad spectrum of genetic and developmental disorders.

About Dr. Lipkin

Paul Lipkin, MD, FAAP, is a Professor of Pediatrics at the Kennedy Krieger Institute and the Johns Hopkins School of Medicine, specializing in Neurodevelopmental Disabilities and Developmental and Behavioral Pediatrics. He has led important national initiatives for the AAP regarding developmental and autism screening and the care of children with neurodevelopmental disabilities. He has been honored as the recipient of the AAP's Arnold J. Capute Award in 2011 for his efforts on behalf of children with disabilities.

American Academy of Pediatrics Section on Neurology (Copyright © 2023)

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spina bifida~ spinal bones~ what is spina bifida~ types of spina bifida~ congenital abnormality~ what causes spina bifida~ spina bifida testing~ spina bifida screening~ spina bifida causes~ damaged nerves~ treating spina bifida~ spina bifida treatment

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Spina Bifida: Types, Causes & Treatment for Children

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One of the most common birth defects, spina bifida can cause problems with movement, sensation, and other body functions. The AAP offers information on the causes, treatments and special concerns for children with the condition.

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Living with Spina Bifida: Adolescents and Teens

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Living with Spina Bifida: Adolescents and Teens

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Guide to help adolescents and teens with Spina Bifida take steps towards independence and get the support they need.

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Knowing health issues and guidelines for teens with spina bifida can help prepare them as they grow.

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Sexual Health in the Spina Bifida Community 

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Sexual Health in the Spina Bifida Community 

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How to talk to your teen about how spina bifida affects sexual function and fertility; how to protect your child from abuse

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Sexual Health in the Spina Bifida Community - Spina Bifida Association

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Organization that provides opportunities for outdoor recreation (cycling, hiking, mountain biking, yoga, and more) to individuals with disabilities.

Phone number: 541-306-4774

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In 1996, passionate members of the local community came together to create access to adaptive ski opportunities for their family members, friends and neighbors with disabilities.

Today, Oregon Adaptive Sports (OAS) is a premiere adaptive sports foundation in the Pacific Northwest providing a range of year-round programs. OAS creates access to over 2,000 high quality outdoor experiences each year to more than 400 unique individuals.

Oregon Adaptive Sports envisions a day when every person with a disability has access to the benefits of outdoor recreation.

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Oregon Adaptive Sports | Outdoor Recreation for People with Disabilities.

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Oregon Adaptive Sports (OAS) is the premiere adaptive sports organization in the Pacific Northwest providing a range of year-round programs. We take adaptive sports to new and amazing places!

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Specialized program that caters to individuals living with disabilities. Offers adaptive alpine and snowboard lessons. Designed for youth 7 years and older.

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Mt. Hood Meadows Ski and Summer Resort | Meadows

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Mount Hood Meadows is one of the largest ski resorts in Oregon and the largest ski resort on Mount Hood. It is located about 67 miles east of Portland, and 35 miles from Hood River along Oregon Route 35. It has both Alpine and Nordic ski areas and offers night skiing, lessons and equipment rentals. In the summer Meadows offers scenic chair rides, a premier hiking experience on Mt. Hood and events on the weekends.

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Provides year-round, community based recreational, social, and educational programs for Eugene area youth and adults with disabilities.

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Adaptive at Hilyard | Eugene, OR Website

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Adaptive Recreation Services at Hilyard Community Center provides recreational, educational and social programs for people with disabilities of all ages.

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US Youth TOPSoccer is a recreational sports program for youth and adults with disabilities. Can find local TOPSoccer clubs here: https://www.usyouthsoccer.org/state-associations/

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TOPSoccer US Youth Soccer TOPSoccer (The Outreach Program for Soccer) is a recreational sports program for children and adults with intellectual, emotional, or physical disabilities offered only through local US Youth Soccer-affiliated soccer […]

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Provides swimmers with a disability the competitive team environment, culture, coaching, training and competitive opportunities to achieve athletic success. Located in Seattle.

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A Swim Team for People with Physical Disabilities
-Est 1994-

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C.A.S.T for Kids Event was designed to create an adaptive environment where children, ages 5-17 can share a day of fun and fishing on the water. Find an event near you: https://castforkids.org/find-an-event-2/

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C.A.S.T. for Kids Foundation Enriching the Lives of Children with Special Needs Through Fishing Our Mission The C.A.S.T. for Kids Foundation enriches the li ...

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Offers rowing opportunities to people with disabilities. Sessions are tailored to the ability of each athlete.

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Nonprofit sailing program that offers accessible boating for people with disabilities and their families, friends, and caregivers.

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Launched in 1991, Footloose Sailing Association is the Northwest's premiere non-profit sailing program for people of all disabilities, their friends, family and caregivers.

The mission of Footloose Sailing Association is to provide safe, accessible and rewarding sailing experiences to disabled members, their friends, families and caregivers. We teach sailing and seamanship, promote camaraderie, personal growth and increased independence to our participants. Footloose was started in 1991 as a 501 C-3 non-profit educational and charitable Washington State Corporation and is a chapter of Disabled Sports USA.

We are a 100% volunteer run organization and exist through generous donations from people like you and the community.

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Footloose Sailing Association - Leave your disability at the dock

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Launched in 1991, Footloose Sailing Association is the Northwest's premiere non-profit sailing program for people of all disabilities, their friends, family and caregivers. The mission of Footloose Sailing Association is to provide safe, accessible and rewarding sailing experiences to disabled members, their friends, families and caregivers.

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Year-round recreational and educational camp experiences for people with diverse abilities of ages 12 and older. Located near Lyons, Oregon.

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Upward Bound supports the belief that every person is important, created by God, worthy of love and caring service. UBC gives every participant opportunities to realize and share their gifts and strengths with each other.

Since 1978 UBC has worked to establish a diverse community of campers, staff and volunteers, intentionally building a strong and inclusive community, promoting respect and understanding of all who participate. UBC staff and board members actively cultivate relationships with business and community members in the Santiam Canyon and beyond in a sincere and conscious effort to expand the understanding of community, acceptance and inclusion, enriching the lives of all participants.

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Upward Bound supports the belief that every person is important, created by God, worthy of love and caring service. UBC gives every participant opportunities to realize and share their gifts and strengths with each other. Since 1978 UBC has worked to establish a diverse community of campers, staff and volunteers, intentionally building a strong and inclusive community, promoting respect and understanding of all who participate.

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Provides camping and recreation experiences for children and adults with disabilities. Offers a welcoming, accessible environment where participants can engage in outdoor activities and create lifelong memories.

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Barrier-free Camp & Respite Service in Vaughn, WA

Since 1974, Easterseals Camp Stand By Me has been a barrier-free environment for children and adults with disabilities to experience all the joys of camp without limitations. Camp is about all the things children and adults CAN do: swim, canoe, sing, eat s'mores, build lifelong friendships and more. We offer week-long sessions in the summer, and weekend respite in the fall, winter, and spring. With low staff to camper ratios and an on-site registered nurse, we can serve children and adults of any ability level.

Camp Stand By Me still offers all of the activities of a traditional summer camp in a safe, accessible environment.

2023 Summer Schedule

Featured Activities

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Easterseals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

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Inclusive social skills day camp supporting friendship development for children with special needs between the age of 5-15.

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Teaching the Language of Friendship

Camp Yakety Yak is an inclusive social skills day camp supporting friendship development for children with special needs, ages 5-15, & social skills
in the workplace instruction for young adults ages 16-22.

CYY 2025 Location:

40 McNary Parkway

Lake Oswego

After enrollment you can access your dashboard

here!

Our 2025 C amp Dates
Registration Opens February 7th, 2025
Camps run Monday-Friday from 10:00-3:00

Week 1: July 7-11

Ocean Odyssey - Join us as we go on an ocean odyssey and explore the wonders of the ocean through arts and crafts, activities, games, and more! ​

​

Week 2: July 14-18

We are all Superheroes - Let's explore what makes each of us unique and special. We will design our own superhero costumes, make a superhero cape, discover our superhero traits, and share our awesomeness with each other with superhero themed arts and crafts, activities, games, and more!

​ ​ ​​

Week 3: July 21-25

Animal Adventures - A whole week of animal fun is planned with animal themed arts and crafts, activities, games, and maybe even some surprise guests!

​

Week 4: July 28-Aug 1

Global Explorers - Grab your passports, we are going on a trip around the world! We will travel the world and visit some exciting new places. Join us as we discover other cultures through arts and crafts, activities, games, and more!

​

Yak Apprentice Program, Ages 16-22: July 7-Aug 1

Thank you to
ASW Global Consulting
for your sponsorship!

Camp Yakety Yak (CYY) is a 501(c)(3) non-profit organization whose mission is to help children with special needs (e.g., Autism, ADHD, Intellectual Disability) grow socially and emotionally by improving their communication skills. The camp's educational mission is two-fold:

1) provide instruction in social & emotional skills to children with special needs & their siblings to support friendship development in a day camp setting;

2) provide an opportunity for future professionals in educational and therapeutic fields to gain knowledge and hands-on experience in working with children with special needs.

Eighty percent of our staff members are students from local universities and high schools who receive 10-30 hours of training and ongoing supervision by our professional faculty.

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Special Needs Day Camp | Lake Oswego, OR | Camp Yakety Yak

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Camp Yakety Yak is a social skills day camp supporting friendship development in children with special needs, AGES 5-15. Siblings and peer models welcome!

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Basketball camp for special needs athletes of all ages.

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Camp Information | Join the Hoop Camp Movement

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Hoop.Camp prohibits discrimination in programs, camps and activities on the basis of race, national origin, color, creed, religion, sex, age, disability, sexual orientation, gender identity, or associational preference. Hoop.Camp also affirms its commitment to providing equal opportunities and equal access to our events for all.

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Non-profit organization that offers day camps for youth and teens with disabilities that allow participants to engage in sports, art, and music.

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Bustin’ Barriers is the outgrowth of passion:

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A love of sports and sharing them with individuals of all abilities; a commitment to inclusiveness and the belief that individuals with disabilities deserve opportunity and access to sports, enrichment activities, and socialization experiences in a safe environment. | Portland Oregon

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Offers summer camp and retreats in the winter and fall. Camp is designed for individuals with developmental and physical disabilities, allowing campers to engage in outdoor recreation and make new friends.

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- about us -

Mt. Hood Kiwanis Camp

Since 1933,

MHKC has partnered with the US Forest Service to help empower children and adults with disabilities through overnight, outdoor, recreational programming. We offer eight week-long sessions of residential summer camp, winter retreats and a family camps at our 22-acre site in the Mt. Hood National Forest.

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MHKC - Empowering Children & Adults with Disabilities

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about us - Since 1933, MHKC has partnered with the US Forest Service to help empower children and adults with disabilities through overnight, outdoor, recreational programming. We offer eight week-long sessions of residential summer camp, winter retreats and a family camps at our 22-acre site in the Mt. Hood National Forest.

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Facebook support group for parents of children with spina bifida.

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Spina Bifida: A Parenting Support Group | Facebook

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This is a place for parents whose children are affected by Spina Bifida. If you are not a parent, but looking to support someone with Spina Bifida, we…

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Facebook group for finding or donating supplies (assistive equipment, etc.).

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

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Resources for driving assessments and driver rehabilitation.

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Offers driving lessons in vehicles with adaptive equipment. For youth and adults.

Phone number: (503)-628-6306

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Driving Resources for Teens with Developmental Differences

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Driving Resources for Teens with Developmental Differences

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Informational resources for teens with neurodevelopmental differences and their families to navigate the process of learning to drive.

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Driving resources for teens with neurodevelopmental differences

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Driving resources for teens with neurodevelopmental differences, such as autism or ADHD.

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Provides DriveABLE assessment (driving evaluation). Cost is $245.

Phone number: (503)-413-3707

Location: 300 N Graham Street, Suite 430, Portland, OR 97227

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Legacy offers the “DriveABLE” driver safety evaluation. The assessment can help determine whether a person is safe to drive. The test takes about an hour.

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Provides DriveABLE assessment (driving evaluation).

Phone number: (503)-413-3707

Location: 19300 SW 65th Avenue, Tualatin, OR 97062

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Legacy offers the “DriveABLE” driver safety evaluation. The assessment can help determine whether a person is safe to drive. The test takes about an hour.

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Provides driving assessments.

Phone number: (503)-216-2610

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Driving safety evaluations.

Phone number: (541)-706-7725

Location: 2500 NE Neff, Bend, OR 97702

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Jeff T. Lango, Occupational Therapist and Certified Driver Rehabilitation Specialist

Phone number: (503)-240-3228

Location: 4370 NE Halsey Street, Portland, OR 97213

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Facebook support group for adults with spina bifida.

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

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Information about continence management.

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Transitioning Urologic Care - Spina Bifida Association

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Options for Pregnancies Affected by SB - Family Education

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Fashion. Function. Inclusion. BILLY Footwear smashes them all together and brings the Most AFO-Friendly Shoes to market in a mainstream space.

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Immersing audiences in the homes of children with medical complexities and disabilities, and their families.

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Research Study about Optimizing the Home Environment

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Research Study about Optimizing the Home Environment

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Skip to content

Funder: Lucile Packard Foundation for Children's Health

Optimizing the Home Environment for Children with Disabilities: Understanding Current Policies and Planning for the Future

Executive summary: Every child deserves a home that meets their health needs, regardless of their family's means or child's conditions. However, existing resources and housing-related policies appear wholly inadequate to address the housing accessibility challenges faced by families of children with disabilities (CWD) across the country. Our prior research in Maryland and Illinois shows that for many CWD, their current housing situation does not have the equipment, supplies, or adapted spaces they need for safe, independent, and developmentally appropriate life at home. Structural problems (e.g. inaccessible bathrooms) and lack of needed equipment (e.g., lifts or accessible bathing tubs) make it difficult for family caregivers to conduct care for their child, which in addition to impacting the child, negatively impacts parental well-being and physical health. While we found that families often relied on Medicaid and Title V programs for financial and planning supports, caregivers still identified cost, informational gaps, and wait lists as key barriers to making needed modifications. Additional barriers identified by families living in rental properties raise equity concerns about how well current housing policies support CWD living in lower-income or otherwise marginalized families.

In this study, we will conduct key informant interviews across 10 states within each of the Health Resources and Services Administration regions to understand the current national landscape of programs and policies that promote housing accessibility and home modifications for CWD. In close partnership with the Lucile Packard Foundation for Children's Health, and guided by an Advisory Board representing parent/family partners, housing and disability policy researchers, legal/disability advocacy experts, and key government agencies, we will then develop a detailed proposal for a national convening aimed at creating a policy agenda focused on optimizing the home environment for CWD and their families to promote their health, quality of life, safety, and function at home.

Principal Investigators (PI)

Principal Investigators (PI)

Principal Investigators (PI)

Research Scientist

Research Coordinators

Parent Partners

Advisory Team
Study Funded by the Lucile Packard Foundation for Children's Health.

©2026 The Johns Hopkins University School of Nursing. All Rights Reserved. Baltimore, Maryland

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Optimizing the Home Environment for Children with Disabilities: Understanding Current Policies and Planning for the Future - Johns Hopkins School of Nursing

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Optimizing the Home Environment for Children with Disabilities: Understanding Current Policies and Planning for the Future Executive summary: Every child deserves a home that meets their health needs, regardless of their family's means or child's conditions. However, existing resources and housing-related policies appear wholly inadequate to address the housing accessibility challenges faced by families of [...]

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Positioning for Success: Toileting Strategies for Children with Physical Disabilities

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Learn practical special needs potty training strategies, including positioning, routines, visual supports, and adaptive equipment for children with physical disabilities.