Hawaii Resources

Family Empowerment Representatives | Treatment and Research Centers | HI 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

Vickie Kirihara, volunteer Family Empowerment Representative  vkirihara@gmail.com 1-808-383-5948


 

Treatment and Research Centers


Clinical Sites - none at this time


 State Agencies - Hawaii


Local Service Agencies

Department of Disabilities Division (DDD)

 1-808-586-5842

Department of Disabilities Division (DDD) DDD is part of the Hawaii State Department of Health. The mission of DDD is to prevent and minimize the effect of disabilities on individuals and their families.

Apply for DDD services

Division of Vocational Rehabilitation (DVR)

 1-855-643-1643

DVR exists to serve its participants. Staff work as a team so participants can achieve their hopes and aspirations for meaningful employment through timely and individualized vocational rehabilitation services. DVR is available for anyone over the age of 22. 

Children with Special Health Needs Program (CSHNP)

  1-808-733-9055

Children with Special Health Needs Program (CSHNP) provides care coordination, social work, nutrition, and other services for children with special health care needs age 0-21 years with chronic medical conditions.   It serves children who have or may have long-term or chronic health conditions that require specialized medical care, and their families.

Hilopa'a F2FHIC 

  1-808-791-3467

As a parent or a caregiver of someone with special health care needs, you are often the ho'okele or steersman navigating through the health care system. Often times, there's no map to help you figure out your next step. The Hilopa'a F2FHIC is here to help you. They are staffed by "veteran moms" who are prepared to give you the kokua you need to guide your family's canoe through the sometimes turbulent waters to good health.

Hawaii Disability Rights Center 

Hawaii Disability Rights Center is the State of Hawaii's designated Client Assistance Program (CAP) and designated Protection and Advocacy (P&A) System for People with Disabilities


Handicap Placard 

Department of Health Disability and Community Access Board (DCAB)

 To apply for a handicap placard in Hawaii, obtain an application form from a county office or from the DCAB web site by clicking on parking application form.

Person with a Disability Parking Permit Application

Satellite Halls

A listing of Satellite Halls, by island, where you can apply for a handicap placard.


State Medicaid   

Hawai‘i Health Connector

 1-877-628-5076

Hawai‘i Health Connector will allow you to apply online for Medicaid. You can also apply by phone. 

QUEST Expanded Access (QExA) 

 1-800-316-8005

QUEST Expanded Access (QExA) is a program the Department of Human Services (DHS) developed for Medicaid clients who are 65 years or older or disabled of all ages, who were previously receiving services through a fee-for-service (FFS) system. The design of QExA is for beneficiaries to receive service coordination, outreach, improved access, and enhanced quality healthcare services coordinated by health plans through a managed care delivery system.

HCBS Waiver Information

Apply through the DDD.


Early Intervention

Early Intervention Services (EIS)

 1-808-594-0066 Oahu  1-800-235-5477 All other Islands

EIS provides services to support the development of infant and toddlers from birth to age three. 

EIS Services

EIS Eligibility

Hi‘ilei Hawai‘i

Hi‘ilei Hawai‘i provides follow along with developmental screening and information for families who are interested in supporting their young child (Age 0-5) to reach his/her optimal development.

Helping Children Learn and Grow


Education   

Department of Education

 1-808-305-9806

Hawaii State Department of Education, Office of Special Education Special education services are made available to any student ages 3 to 22 who demonstrates a need for specially designed instruction, after an eligibility determination. 

IEP Information


Conservatorship

Conservatorship Forms

US Legal forms has forms available for download on conservatorship in Hawaii.


Transition to Adult Services  

SPIN Transition Services 

 1-808-586-8126

SPIN Transition Services Beginning at age 14 (or younger if appropriate), your child’s IEP will include a focus on what courses are needed to match up to future goals. By age 16, the IEP will also include appropriate, measurable goals for after high school that are based on your child’s strengths and interests and on age-appropriate transition assessments. The plan should state what services are needed to transition successfully into college, employment and/or living in the community. spin@doh.hawaii.gov 

State of Hawaii Transition Services


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) 


Legal Resources 

The Arc

 

The Arc in Hawaii is committed to helping Hawai'i's people with intellectual disabilities secure the power to choose where and how they live, learn, work and play in the community.


Recreation

Access Surf

AccesSurf is a nonprofit creating community based programs for anyone with a disability to enjoy the water.

Waimea Valley Park and Botanical Gardens 

Waimea Valley Park and Botanical Gardens has a 3/4 mile paved, wheelchair accessible path that leads you to a swimming hole with a waterfall. At the waterfall, there are changing rooms, life jackets available for use, and lifeguards to assist with transfers, if needed, into the water.  A great way for the whole family to participate in a safe, fun activity! We went and did this with our girls and it is definitely something I would recommend to anyone going to Oahu!


More Parent Recommendations 

Hawaii IRSF Rett Syndrome Families Facebook page

Click and ask to join!