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.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Pre-Admission Screening and Resident Review (PASRR)
Visit Pre-Admission Screening and Resident Review Website
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)
Visit DHS Targeted Case Management Website
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.
Glenwood Resource Center and Woodward Resource Center Iowa
Visit Glenwood Resource Center and Woodward Resource Center Iowa Website
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
Visit State Supplementary Assistance Website
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.
The Dream Factory of Iowa
Visit The Dream Factory of Iowa Website
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.
Visit Iowa Medicaid Website
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.
Visit Consumer Directed Attendant Care (CDAC) Website
Visit Consumer Directed Attendant Care (CDAC) Website
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)
Visit Consumer Choices Option (CCO) Website
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)
View 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)
View 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
View HCBS Waiver Provider Contacts
Program oversight is provided by program managers from the Division of Medical Services, Bureau of Long-Term Care.
Visit Early ACCESS Website
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
Visit Early Childhood Special Education Website
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.
Parent Information on Special Education
Visit Parent Information on Special Education Website
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 [email protected].
View Iowa Department of Education School District Maps
Iowa Guardianship and Conservatorship
Visit Iowa Guardianship and Conservatorship Website
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
Visit Iowa Legal Aid Website
Iowa Legal Aid provides resources and information on guardianship and conservatorship.
Transition to Adult Services
Visit Iowa DMV Website
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected]drome.org.
Legal Resources & Information
The ARC of Iowa
Visit The ARC of Iowa Website
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.