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
Developmental Services uses a person-centered approach in the development of the Individual Service Plan (ISP) which is the tool that drives the service delivery to the individual served. The intent of Service Coordination is to assist recipients in gaining access to needed medical, social, educational, housing, vocational, transportation needs and other support services including natural supports. Targeted Case Management is specific to those eligible for DS services under the Medicaid State plan and includes assessment, care planning, referral/linkage and monitoring/follow-up. For more information about Service Coordination, please contact the Desert Regional Center.
Family Support Services Program
The Family Support Services Program was developed to assist families to care for their relatives in the family home as a means to prevent out-of-home placement. It provides financial assistance for eligible families to obtain services for their family member.
Supported Living Arrangement Program
The Supported Living Arrangement Program offers residential supports to individuals who require assistance to live in the least restrictive community setting possible. SLA offers habilitative, and skill building supports to individuals designed to maximize independence in the community. Possible living arrangement settings include an individual’s family home, apartments, host homes, foster homes and shared residences. This service is provided through agencies that are contracted with the regional centers. For additional information, please contact your Regional Center. .
Assistive Technology for Independent Living (AT/IL) Program
The Assistive Technology for Independent Living (AT/IL) Program can provide assistance to individuals to identify the appropriate Assistive Technology (AT) that is necessary for the individual to care for themselves or be cared for in their homes and community rather than in a care facility. The program also has resources to provide AT when no other resources are possible. Case coordination is provided through non-profit community partners C*A*R*E* Chest of Sierra Nevada and Rebuilding All Goals Efficiently (RAGE).
Katie Beckett Waiver
– Northern Nevada
– Southern Nevada
Katie Beckett Waiver Under the Katie Beckett Eligibility Option Medicaid eligibility category, a State is allowed to waive the deeming of parental income and resources for a disabled child under 19 years of age who would be eligible for Medicaid if he or she were in a medical institution and who is receiving, while living at home, medical care that would normally be provided in a medical institution. To request services in Northern Nevada contact DHCFP Reno District Office. For Southern Nevada contact DHCFP Las Vegas District Office.
Waiver for Persons with Physical Disabilities (PD)
This waiver serves recipients of all ages who have a documented physical disability, as determined by DHCFP and the Aging and ADSD, and who maintain the required Level of Care (LOC) (admission into a Nursing Facility within 30 days if waiver services or other supports were not available). To request services, contact the appropriate ADSD office.
Waiver for Individuals with Intellectual Disabilities and Related Conditions (ID)
This waiver serves recipients of all ages who have a documented intellectual disability or related condition, as determined by DHCFP and ADSD, and who maintain the required Level of Care (LOC) (admission into a Nursing Facility within 30 days if waiver services or other supports were not available). To request services, contact the appropriate ADSD office.
Nevada Check Up
Nevada Check Up is the State of Nevada’s Children’s Health Insurance Program (CHIP). Depending on your income, your children (birth through 18 years of age) may qualify for coverage through Nevada Check Up. If you qualify, you will be required to pay a quarterly premium based upon your family size and income but won’t be responsible for things like co-payments and deductibles. In Nevada, children living in households with an annual income of up to 200% of the federal poverty level may qualify for coverage through Nevada Check Up. This is $47,700 for a family of four (based on 2014 FPLs). You can enroll at NevadaHealthLink.com or HealthCare.gov
Nevada Early Intervention Services (NEIS)
– Southern Nevada
1 – Northern Nevada
Nevada Early Intervention Services (NEIS) programs are available to families with children under the age of three (3) who meet Nevada’s eligibility requirements. Families join together with NEIS staff to develop an Individualized Family Services Plan with outcomes that draw on the family’s priorities and concerns. If you are concerned about your child’s development, the first step is to have your child referred for evaluation and assessment. You can refer your child directly to an Early Intervention program or you can have your child’s physician make the referral for you. You will be assigned a service coordinator who will help you through the process. For more information, please contact an Early Intervention Office near you.
Family Law Self Help Center
When an adult is unable to care for himself, or a child’s parents are unable to care for the child, a guardianship may be needed. This site has information about the purpose and types of guardianship, where to file for guardianship, and some alternatives to a court-ordered guardianship.
Nevada Supreme Court
The Nevada Supreme Court website offers information on guardianship. [email protected]
Transition to Adult Services
– Northern Nevada
1 – Southern Nevada
Vocational rehabilitation services are available to students in high school who have a disability that results in a substantial barrier to employment, not just those who take special education classes. Eligibility may be determined within 60 days. Students should start Rehabilitation program during the last two years of high school. Students may apply directly to Vocational Rehabilitation or may be referred.
The Nevada DMV issues handicap placards and plates. If you wish to obtain placards only, you can do so my mail, fax or in person at a DMV Full-Service Office. Mail the completed application to 555 Wright Way, Carson City, NV, or fax it to 1-775- 684-4797. To obtain license plates, you must visit a DMV Full-Service Office or a County Assessor office. If you are obtaining license plates and your vehicle is currently registered in Nevada, download and complete the appropriate application and obtain a physician’s signature. Bring this and the old plates to the DMV or Assessor. The DMV issues authorization letters that contain the name and address of the individual who holds the license plates or placards. You must keep this letter, or a copy, in the vehicle that is displaying disabled plates. You must keep it with you if you are using placards.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
The Arc Nevada
Nevada Disability Advocacy & Law Center (NDALC)
Nevada Disability Advocacy & Law Center (NDALC) is a private, statewide, non-profit 501(c)(3) organization that serves as Nevada’s federally mandated protection and advocacy system for human, legal, and service rights for individuals with disabilities.