Oregon Resources

Family Empowerment Representatives  | Treatment and Research Centers | OR State Agencies | Parent Recommendations


 Family Empowerment Representatives


Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome.  Contacting them should be your first step.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

Joey Razzano, volunteer Family Empowerment Representative,  Portland OR  joey.razzano@comcast.net 1-503-460-3035 (home) 1-503-998-5096(cell/text) 


Treatment and Research Centers


Clinics & Clinical Trials

Rett Syndrome Program/Oregon Health and Sciences University

1-800-452-3563 1-503-494-8095

Rett Syndrome Program at Child Development and Rehabilitation Center of Oregon Health and Sciences University Clinic director is Dr. Mario Peterson who has expertise in genetics and pediatrics. 


 State Agencies - Oregon


Local Service Agencies

Office of Developmental Disabilities Services (ODDS)

ODDS offers supports to children and families ranging from in home family support, intensive in-home supports and 24-hour services in foster care or residential placement. Services offered have specific eligibility standards and are usually accessed through the local Community Developmental Disabilities Programs (CDDP) .

County Assistance Community Developmental Disabilities Program (CDDP)

Access to K PLAN services

Health Insurance Premium Payment Program (HIPP)

The Health Insurance Premium Payment Program (HIPP) is a Medicaid program that pays for the private health insurance premiums for certain individuals with high medical costs.

Oregon Home Care Commission

The Oregon Home Care Commission is a central state-sponsored registry for Homecare and Personal Support Workers (PSW's) directed to work with culturally diverse organizations and groups to recruit, train, and certify homecare workers who desire to become community health workers and personal health navigators. They also administer a program to allow private pay consumers to purchase homecare services from the Commission through its Registry.


Handicap Placard

Oregon DMV

To apply for a handicap placard, you must complete the Application for Family Parking Permits for Disabled Persons (Form 265FPP) or the Application for Program Parking Permit (Form 265PP), and apply by mail to DMV Driver Issuance Unit, 1905 Lana Ave NE, Salem , OR 97314. Family permits are valid for 8 years after the date of issuance.


State Medicaid 

Medically Involved Children's Program (MICP)

1-971-673-2990

MICP services are exclusively intended to enable a child who meets the nursing facility level of care to return to the family home, or remain at the family home, with specialized supports and services. MICP services preserve the capacity of a parent to care for their child, assure the health and safety of the child within the family home, and enable a child who has been separated from their family due to their health and medical care needs to return to the family home to prevent out of home placement. You can apply by phone.

Medically Fragile Children's Services (MFCS)

 1-971-673-3000

MFCS provides waiver case management, environmental safety modifications, family training, individual goods and services, special diets, specialized medical supplies, for medically fragile individuals ages 0-17. You can apply by phone.

Behavior Program

1-971-673-2995

The Behavior Program provides waiver case management, environmental safety modifications, family training, individual directed goods and services, special diets, specialized medical supplies for individuals with ID/DD ages 0-17. You can apply by phone.


Early Intervention

Early Intervention and Early Childhood Special Education (EI/ECSE)

The EI/ECSE program provides special services to children with disabilities and their parents. Each county has an EI/ECSE referral and evaluation agency. Click the link for contact information for each county.


Education

Oregon Department of Education

The Oregon Department of Education Office of Student Services supports and monitors programs that provide services to students with diverse needs.

Disability Rights Oregon

Disability Rights Oregon provides advocacy services for Oregonians who are having an issue with education, including special education and transition services.


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

The Arc Oregon

The Arc Oregon, together with its network of members and affiliated chapters, advocates for the rights and full community participation of all children and adults with intellectual and developmental disabilities.


Transition to Adult Services

Oregon Department of Education

Oregon Department of Education has a listing of services available for secondary transition for students with disabilities.

Family And Community Together (FACT)

Family And Community Together (FACT) is a family leadership organization based in Oregon for individuals and their families experiencing disability, working collaboratively to facilitate positive change in policies, systems, and attitudes, through family support, advocacy, and partnerships.


Parent Recommendations

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

Shriners Hospital for Children—Portland

Shriners Hospital for Children- Portland provides the highest quality care for a wide range of orthopedic and neuro-musculoskeletal disorders and diseases.  Located on the campus of Oregon Health Sciences University, they have close affiliations with world-class doctors and researchers who are committed to continuously advancing orthopedic treatment. They also provide a variety of recreational activities throughout the year including swimming.


Legal Resources

Disability Rights Oregon (DRO)

Disability Rights Oregon (DRO) is Oregon’s designated Protection & Advocacy (P&A) System. DRO works to uphold the legal rights of people with disabilities. DRO promotes Opportunity, Access and Choice for individuals with disabilities. We assist with legal problems directly related to disabilities.

Special Needs Trust ABLE (Achieving A Better Life Experience)

Special Needs Trust ABLE (Achieving A Better Life Experience) Act creates a new section of IRS tax code to establish new tax-favored accounts. Assets in an ABLE account and distributions from the account for qualifying expenses would be disregarded or receive special treatment when determining the beneficiary’s eligibility for most federal means-tested benefits. ABLE accounts will provide a low cost alternative to special needs trusts that will allow individuals and families experiencing disabilities to save money while preserving eligibility for public benefits. These  accounts will be set up and administered by the State of Oregon through the Treasury Department as a 529 plan, similar to the 529 college savings plans.


Recreation

Enchanted Forest Theme Park

Enchanted Forest Theme Park has many attractions, shows and restaurants that are accessible.

Oregon Adaptive Sports

Oregon Adaptive Sports offers a wide variety of sports, such as kayaking, skiing and snowboarding.

Camp Attitude

Camp Attitude  is a free, week long, wheelchair accessible camp for the whole family. Their mission is to promote active participation in a safe & inclusive outdoor environment. They strive to encourage positive attitudes through a quality camping experience. Helping people reach their dreams and overcoming unusual obstacles and challenges is central to their mission.

Camp Kiwanis At Mt. Hood

Camp Kiwanis At Mt. Hood Kiwanis Camp empowers children and adults with disabilities. For over 80 years, they have partnered with the U.S. Forest Service to provide individuals with disabilities an outstanding overnight recreational opportunity in the Mt. Hood National Forest. They offer eight week-long sessions of residential summer camp, providing campers with a one-on-one camper/counselor ratio. They also offer programming throughout the year at their fully accessible 22-acre campsite.


More Parent Recommendations

Oregon rettsyndrome.org Facebook page

Click and ask to join!

Facebook Strollathon Page

Get in touch with other families and attend this annual event.

Shutterfly Share Site for Portland Stroll

To view pictures from the past years' strolls.

Wheel to Walk Foundation

The Wheel to Walk Foundation is a non-profit organization that helps children with disabilities, 20 years of age and younger, obtain medical equipment or services not provided by insurance. They purchase items such as therapy tricycles, wheelchairs and wheelchair modifications, gait trainers, adaptive strollers, shower chairs, patient lifts, special beds, orthotics, communication devices, and speech therapy. They strongly believe that no child or young adult with special needs  should go without items that could improve the quality of daily life.

Zetosch Funds

The intent of the Sidney and Lillian Zetosch Fund is to buy equipment for children with special health needs, to help those children succeed in school. OCCYSHN receives an annual distribution of these funds from the Oregon Community Foundation.

Durable Medical Equipment Reuse Program

This is a state program that accepts gently used DME donated at local warehouses.  The equipment is then sanitized and refurbished to like new quality, and made available for placement with clients after a trained physical therapist, Assistive Technology Professional (ATP) or other licensed or certified professional meets with the client to ensure that proper fit and function can be achieved.

Telecommunication Devices Access Program (TDAP)

Oregon Public Utility Commission (PUC) Telecommunication Devices Access Program (TDAP) loans adaptive devices at no cost with no income restrictions to Oregonians who cannot access the telephone through conventional means. This includes Speech Generating Devices such as Augmentative Communication Devices and iPads.

Magic Wheelchair

Magic Wheelchair makes costumes for children in wheelchairs. Children choose what they want to be for Halloween, a parade, a celebration, or another big day and then the artists and volunteers at Magic Wheel make a custom fit costume for the child's specific wheelchair.

Children's Healing Art Project (CHAP)

Children's Healing Art Project (CHAP) brings the healing power of art to children + families facing medical challenges through a mobile team of teaching artists working in a partnership with hospitals, community organizations and schools. At CHAP, children are known for their creativity and ingenuity—not by their disease, diagnosis or disability. Lifetime free membership.

Swindells Care Notebook and Organizer

This Care Notebook functions as a personal health record and helps parents coordinate the complex records of their child's care, services and providers. The notebook is available in English and Spanish. The Swindells Resource Center staff offers training to help families get started with the Care Notebook.