Nevada Resources

Family Empowerment Representatives  | Treatment and Research Centers NV 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

Brenda Turley, volunteer Family Empowerment Representative, breart@sbcglobal.net    1-775-830-3556


Treatment and Research Centers


Clinics -  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. 

Clinical Trials- none at this time


State Agencies - Nevada


Local Service Agencies

Developmental Services

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.

Aging and Disability Services Regional Center Offices

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

 1-775-687-4210

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. adsd@adsd.nv.gov 

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).

Children and Youth with Special Health Care Needs (CYSHCN) Program

1-775-684-4285

The Children and Youth with Special Health Care Needs (CYSHCN) Program provides resources and support to community agencies serving children from birth to age twenty one. 


Handicap Placard 

Nevada DMV

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.

DMV Full Service Offices

County Assessor Offices

Handicap Placard/Plates Application


State Medicaid 

Apply for Nevada Medicaid

Katie Beckett Waiver

1-775-687-1900 Northern Nevada   1-702-668-4200 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.

ADSD Offices

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


Early Intervention

Nevada Early Intervention Services (NEIS)

1-702-486-9200 Southern Nevada   1-775-688-1341 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.

Early Intervention Offices


Education

Office of Special Education

1-775-687-9171

The Nevada Department of Education (NDE), Office of Special Education is committed to ensuring that ALL students in Nevada are college- and career- ready upon exit from the public school system.  


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.

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

 1-775-687-9815

The Nevada Supreme Court website offers information on guardianship. guardianships@nvcourts.nv.gov  


Transition to Adult Services

Nevada DETR

1-775-687-6860  Northern Nevada  1-702-486-5230 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.  

Transition Services Brochure


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 Nevada

The Arc is the nation's leading advocate for all people with intellectual and developmental disabilities and their families and the premier provider of the supports and services people want and need.

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.


Recreation


More Parent Recommendations

Nevada IRSF Rett Syndrome Families Facebook page

Nevada Strollathon Facebook page