Iowa Resources

Family Empowerment Representatives | Treatment and Research Centers | IA 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

Charley Weaver, Volunteer Family Empowermemt Representative  cweaver@iowaheart.com  1-614-919-9100

Crystal Weaver, Volunteer Family Empowermemt Representative    crystal.weaver@van-burencsd.org  1-641-936-7257


Treatment and Research Centers


Clinical Sites - none at this time

Signifies site involved with the Natural History Study

The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials. 

Other Research Studies- none at this time


State Agencies - Iowa


Local Service Agencies

Iowa Department of Human Services - MHDS Regional Contacts 

Iowa’s mental health and disability services system provides locally delivered services, regionally managed with statewide standards. Local access to disability services for adults is provided either by counties organized into a regional service system or by an individual county that is exempted from joining a region. Regional leaders coordinate quality community services that support individuals with disabilities in obtaining their maximum independence.

Regional Coordinators of Disability Services

Pre-Admission Screening and Resident Review (PASRR)

1-515-281-5318

Everyone who applies for admission to a Medicaid certified nursing facility (NF), regardless of funding, must be "screened" for evidence of serious mental illness (MI) and/or intellectual disability, developmental disabilities, or related conditions (collectively abbreviated as "ID"). The intent of PASRR is to ensure that all NF applicants are thoroughly evaluated, that they are placed in nursing facilities only when appropriate, and that they receive all necessary services while they are there. 

DHS Targeted Case Management (TCM)

1-319-232-0477

DHS Targeted Case Management (TCM) is a service that manages multiple resources for Medicaid members. It is designed to help persons with intellectual disabilities, brain injury, or developmental disabilities gain access to appropriate and necessary medical services and interrelated social and educational services. Targeted Case Managers facilitate the  assessment and planning process by working with consumers, families, and service providers,  to create an individualized plan based on a comprehensive assessment of needs for each person. In addition, case managers assist consumers and/or parents or guardians in navigating the service system. 

hawk-i

1-800-257-8563

hawk-i provides healthcare coverage for uninsured children ( ages 19 and under) of working families. They can also provide dental coverage. You can apply online or call to have an application mailed to you that you can return.  

Glenwood Resource Center and Woodward Resource Center Iowa

Glenwood Resource Center and Woodward Resource Center Iowa have two State Resource Centers that provide a full range of active treatment and habilitation services to individuals with severe intellectual disabilities. The Resource Centers prepare and support individuals to live safe, successful lives in the home and community of their choice. 

State Supplementary Assistance

1-877-347-5678

State Supplementary Assistance is a  fully state-funded program designed to meet the additional special needs of aged, blind, and disabled people not met by the standard benefit rate paid by Supplemental Security Income (SSI). You can apply online. 

Local DHS Offices

Child Health Specialty Clinics (CHSC)

Child Health Specialty Clinics (CHSC) is a community-based public health agency that services Iowa children and youth with special health care needs (CYSHCN). Child Health Specialty Clinic Regional Centers are located throughout Iowa.

Family to Family Iowa

1-800-450-8667

Family to Family Iowa is a statewide network of Family Navigators who provide assistance to families of children with special needs (developmental, behavioral, emotional, physical) at no cost to families.  Call to get connected to a Navigator. 


Handicap Placard

 Iowa DMV

You can apply for a disabled parking placard either in person or by mail. You must submit the completed application with a medical statement from a medical professional. You can bring your application to your local Vehicle Services Office or mail it to the address listed on the website.

Application for Persons with Disabilities Parking Permit for Iowa Residents


State Medicaid 

Iowa Medicaid

1-855-889-7985

Iowa Medicaid Enterprise (IME) is the division of DHS that administers the Iowa Medicaid program. On April 1, 2016, the DHS transitioned most Iowa Medicaid members to a managed care program called IA Health Link. This program is administered by three contracted managed care organizations (MCOs) which provide members with comprehensive health care services, including physical, behavioral and long-term care services and support.  You can check eligibility and apply online. 

Consumer Directed Attendant Care (CDAC)

In the Home and Community Based Services (HCBS) waiver program, there is an opportunity for people to have help in their own homes. CDAC services are designed to help people do things that they normally would for themselves if they were able.  A person may consider hiring a CDAC assistant.

Consumer Choices Option (CCO)

The Consumer Choices Option (CCO) is an option under the HCBS waivers that gives you control over a targeted amount of Medicaid dollars so that you can develop a plan to meet your needs by directly hiring employees and/or purchasing other goods and services. CCO offers more choice, control and flexibility over your services as well as more responsibility.

Medicaid Home and Community Based Services Health & Disability Waiver (HCBS HD)

The Medicaid Home and Community Based Services Health & Disability Waiver (HCBS HD) provides service funding and individualized supports to maintain eligible members in their own homes or communities who would otherwise require care in a medical institution. Provision of these services must be cost effective.  Apply through DHS.  Children will then be assessed by Child Health Specialty Clinics.

Medicaid Home and Community Based Intellectual Disability Waiver (HCBS ID)

The Medicaid Home and Community Based Intellectual Disability Waiver (HCBS ID) provides service funding and individualized supports to maintain eligible members in their own homes or communities who would otherwise require care in a medical institution. Provision of these services must be cost effective. Apply through DHS.

HCBS Waiver Provider Contacts

Program oversight is provided by program managers from the Division of Medical Services, Bureau of Long-Term Care.


Early Intervention

Early ACCESS

 1-888-425-4371

Early ACCESS is Iowa's Early Intervention program.  The purpose of this program is for families and staff to work together in identifying, coordinating and providing needed services and resources that will help the family assist their infant or toddler to grow and develop.  Your Regional provider can provide more information. 

Early Childhood Special Education

1-515-281-5502

Early Childhood Special Education offers services for children, three to five years of age and their families through area education agencies and local school districts. 


Education

Parent Information on Special Education

  1-515-281-3249

Special education involves specially designed instruction tailored to the unique needs of each child, and is provided at no cost to parents. For assessment questions contact Colleen Anderson colleen.anderson@iowa.gov.

Iowa Department of Education School District Maps

1-515-281-3968


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.

Iowa Guardianship and Conservatorship

Guardianship and conservatorship are court cases that arrange for a person, called a guardian or a conservator, to make certain decisions for another person (called the ward). A guardianship or conservatorship can be set up for a person when their decision making capacity is so impaired that they are unable to care for their own personal safety or to provide for their own necessities. The person must be at risk of physical injury or illness.

Iowa Legal Aid 

Iowa Legal Aid provides resources and information on guardianship and conservatorship.


Transition to Adult Services

Iowa DE Secondary Transition

1-515-281-5265

This department focuses on the transition of youth with disabilities from high school to learning, living and working in the community. For more information, contact Kim Drew at kim.drew@iowa.gov 


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 of Iowa

The Arc represents, supports and acts on behalf of individuals and their families regardless of level of ability or membership in The Arc. The Arc believes in self-determination by empowering people with the supports needed to make informed decisions and choices.


Recreation


More Parent Recommendations

Iowa Facebook page for Rett Syndrome Families