There are numerous national and state resources providing information, services and support for persons with TBI and their families. The following listing of resources is from the Missouri Greenbook, a publication developed by the Missouri Head Injury Advisory Council, the Missouri Department of Health and Senior Services, and the Brain Injury Association of Missouri.
The entire Missouri Greenbook can be accessed online at: health.mo.gov/living/families/shcn/pdf/TBIGuideGreenBook.pdf.
The Brain Injury Association of America (BIAA)
Founded in 1980, the Brain Injury Association of America is a national organization serving and representing individuals, families, and professionals who are touched by a traumatic brain injury. The BIAA has a network of more than 40 chartered state affiliates to provide information, education and support to assist the 5.3 million Americans currently living with traumatic brain injury and their families. Information about the BIAA affiliate in each state can be found on the BIAA Web site or by calling the association’s toll-free number listed below.
Toll-free phone: 800-444-6443
Web site: www.biausa.org
The Brain Injury Association of Missouri (BIA-MO)
The Brain Injury Association of Missouri is a community-based, 501 (c)3 nonprofit organization serving people with brain injury, their families, caregivers, physicians, therapists, case managers and others throughout the state. Founded in 1982 by a group of parents, BIA-MO works through regional chapters and support groups across Missouri. The BIA-MO is a chartered state affiliate of the Brain Injury Association of America. Contact the BIA-MO for brain injury information, resources and a schedule of times and locations of support groups in your area.
Toll-free phone: 800-377-6442
Web site: www.biamo.org
State and Federal Agencies
Missouri Department of Health and Senior Services (DHSS)
Bureau of Special Health Care Needs (SHCN)
The DHSS Bureau of Special Health Care Needs provides service coordination and services for children and adults with disabilities. Programs available through SHCN include:
- Children with Special Health Care Needs Program – ages birth to 21
- Adult Head Injury Program – ages 21 to 65
Service coordination is available free of charge to all individuals who are eligible for SHCN programs regardless of income.
Service coordination includes:
- Evaluation and assessment of needs
- Information and education
- Assistance in locating and accessing medical care, housing, counseling, transportation and rehabilitation services
Contact SHCN for service coordination services and other services available through the SHCN program.
Toll-free phone: 800-451-0669
Web site: health.mo.gov/living/families/shcn/
Division of Senior and Disability Services
The DHSS Division of Senior and Disability Services provides a variety of services to eligible disabled adults between the ages of 18 and 59, as well as seniors over the age of 60 who are recipients of MO HealthNet. Contact the division to request an assessment for home and community-based services.
Toll-free phone: 800-235-5503
Web site: http://health.mo.gov/seniors/index.php
Missouri Department of Social Services (DSS)
The Missouri Department of Social Services is the agency that administers MO HealthNet (formerly known as Medicaid), income maintenance/assistance and food stamps. Some state agencies may require MO HealthNet eligibility or proof of ineligibility in order to receive their services. Visit the DSS Web site for more information on the programs you are interested in. Contact your local DSS office for assistance.
Web site: www.dss.mo.gov
MO HealthNet is a division of DSS that purchases and monitors health care services for low income and vulnerable citizens. The agency assures quality health care through the development of service delivery systems, standards setting and enforcement, and education of providers and participants.
Web site: www.dss.mo.gov/mhd/
Missouri Department of Elementary and Secondary Education (DESE)
Division of Vocation Rehabilitation (MDVR)
DESE’s Division of Vocation Rehabilitation (MDVR) can assist individuals who want to work but who have disabilities that keep them from finding or keeping a job. The Vocation Rehabilitation (VR) program specializes in employment and training services. To be eligible, you need to have a physical or mental impairment that causes problems with working and need VR services to be successfully employed. Once eligible, you will work with a counselor to develop a plan for your rehabilitation. VR will provide vocational information and guidance, allowing you to make informed choices about your vocational plan.
The MDVR Independent Living (IL) program provides services to people with disabilities to increase their independence and their opportunity to participate in day-t-day life within their communities. There are 22 Centers for Independent Living (CILs) statewide that offer independent living services. The CILs are funded through Vocational Rehabilitation grants and are manages by people with disabilities who have been successful establishing their own independent lifestyles. Call or visit their Web site to see if you are eligible for services.
Toll-free phone: 877-222-8963
Web site: www.dese.mo.gov/vr
Missouri Veterans Commission (MVC)
The MVC’s Service to Veterans Program, accredited Veterans Service Assistants (VSA) provide counseling and assistance to thousands of veterans and their dependents throughout Missouri. These trained professionals counsel veterans on available VA and state veterans’ benefits and complete and submit claims applications with all necessary documentation.
Phone (for benefits): 866-838-4636
Phone (Jefferson City): 573-751-3779
Web site: www.mvc.dps.mo.gov
Missouri Department of Insurance (MDI)
The Missouri Department of Insurance provides oversight for insurance companies operating in Missouri. Adequate insurance for special needs individuals should contain the following components:
- Basic medical services including physician services, preventative exams, immunizations, inpatient, outpatient, emergency room services, and prescription drug benefits
- Behavioral health services (mental health services or counseling)
- Therapies (physical, occupational and speech)
- Hearing and vision services
- Affordable benefits package (co-pays, premiums, deductibles, etc.)
- Case management or service coordination
For more information regarding insurance companies offering insurance to individuals with special health care needs, call or visit the department’s Web site (Please have individual’s name, address, date of birth, diagnosis and current insurance information before calling).
Toll-free phone: 800-726-7390
Web site: www.insurance.mo.gov
Missouri Department of Public Safety (MDPS)
Missouri Crime Victims’ Compensation Unit
The Crime Victims’ Compensation Program offers help for crime victims by providing financial assistance to victims who have suffered physical harm as a result of violent crime. In the case of death, the program helps the victim’s dependents. The Crime Victim’s Compensation Program is designed to assist victims of violent crimes through a period of financial hardship as a payer of last resort. Is a victim has exhausted other collateral sources, such as health insurance and has no other source of reimbursement, the program can help pay for medical costs, wage loss, psychological counseling, funeral expenses and support to a maximum limit.
Web site: http://mova.missouri.org/missour_victims-comp.htm
Social Security Administration (SSA)
The Social Security Administration administers Social Security Disability Income (SSDI) and/or Supplemental Security Income (SSI). If you think you may be eligible for payments, or to file a claim, contact your local Social Security Office. If you want someone to help you, such as a family member, caseworker or other representative, that person may contact the office for you.
Toll-free phone: 800-772-1213
Web site: www.socialsecurity.gov
Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention is one of the major operating components of the U.S. Department of Health and Human Services and a source of credible health information. Visit the CDC Web site for no cost publications about traumatic brain injury.
Toll-free phone: 800-232-4636
Web site: www.cdc.gov/ncipc/tbi/TBI.htm
Midwest Special Needs Trust (MSNT)
The Midwest Special Needs Trust (formally known as Missouri Family Trust) Brain Injury Initiative provides trust services for persons with disabilities. The organization was established as a result of advocacy by parents and professionals who realized that many obstacles hinder planning for the financial future of individuals with disabilities.
Special needs trusts are a type of trust specifically designed for individuals with disabilities. If properly structured and administered, special needs trusts do not affect an individual’s eligibility for benefits such as Social Security Income (SSI) or Medicaid. In addition, MSNT administers the Charitable Trust. Trust funds are used to provide assistance to individuals with disabilities who meet eligibility and income criteria.
Toll-free phone: 888-671-1069 Web site: www.midwestspecialneedstrust.org
MPACT (Missouri Parents Act)
The Missouri Parents Act provides information on education for children with disabilities. MPACT is a statewide parent training and information center addressing all disabilities. The organization’s mission is to ensure that all children with special needs receive an education that allows them to achieve their personal goals.
Toll-free phone: 800-743-7634
Web site: www.ptimpact.org
Missouri Association for Community Action (MACA)
The Missouri Association for Community Action strives to provide individuals, families, and local communities at or near the poverty level, or in crisis, with essential resources and interpersonal support to move toward appropriate self-sufficiency. Call or visit the organization’s Web site for a listing of community action agencies in your area.
Web site: www.communityaction.org
First Hand Foundation
The First Hand Foundation is a nonprofit, 501 (c)(3) organization supported by Cerner Corp., its associates, business partners and friends. The foundation assists individual children with health-related needs when insurance and other financial resources have been exhausted. First Hand provides both major and minor financial assistance and strives to change the lives of children around the world, one child at a time.
Web site: www.firsthandfoundation.org
Missouri Head Injury Advisory Council (MHIAC)
The Missouri Head Injury Advisory Council is a governor-appointed advisory council that advises the Missouri Department of Health and Senior Services on issues related to traumatic brain injury. The mission of the MHIAC is to lead in the development of a collaborative statewide system of prevention, public awareness and provision of services and supports driven by the needs of individuals with brain injury and their families. The MHIAC is made up of members from around the state representing TBI survivors and their families, health care providers, community-based providers, and state agencies. The MHIAC Web site contains links to important resources and current activities regarding TBI in Missouri.
Web site: http://governor.mo.gov/boards/show/HEADINJU
Family Caregiver Alliance (FCA)
The Family Caregiver Alliance is a public voice for caregivers. They pioneer programs on information; education, services, research and advocacy to support and sustain the important work of families nationwide caring for loved ones with chronic, disabling health conditions.
Toll-free phone: 800-445-8106
Web site: http://www.caregiver.org/caregiver/jsp/home.jsp
Brain Injury Listserves, Discussion Boards and Chat Rooms
Some people have found these avenues to be helpful in providing a convenient place to meet for support and information for people who are living with brain injury. There are many listserves, discussion boards and chat rooms in existence. Search the Web for “brain injury listserves, discussion boards and chat rooms” and explore the options available.
Caution must be taken to be aware of identity theft and other potential problems if you use the Internet. You should be careful when using the Internet and not release any personal information about yourself that is not necessary.
Missouri Protection and Advocacy (MO P&A)
Missouri Protection and Advocacy is a federally mandated system in the state of Missouri, which provides protection of the rights of persons with disabilities through legal-based advocacy. MO P&A is a member of the National Disability Rights Network (NDRN). Contact the MO P&A to learn more about their services.
Toll-free phone: 800-392-8667
Web site: www.moadvocacy.org
Legal Services of Missouri
Legal Services of Missouri provides civil legal services to low income and elderly people in Missouri. You can find an office in your area on the organization’s Web site.
Web site: www.Ismo.org
Missouri Bar Lawyer Referral Service
The Missouri Bar Association offers a lawyer referral service. The service allows you to speak with an experienced staff person who will help you figure out if you need a lawyer or may direct you to other information and resources. If you need legal advice or representation, the referral service can refer you to a lawyer who practices within your geographical region and is the kind of attorney that is appropriate for your situation. The lawyer referral service is not a free service. You can find more about the Missouri Bar Service at:
Web site: www.mobar.org
Each community in Missouri is different in the types of community services that are available. You will want to check in your own city or town to find out what is offered. Your local newspaper may have a section on volunteering that will give you some ideas. Most areas have implemented a 2-1-1 system. By dialing 2-1-1, you can make a toll-free call to someone who will connect you with available community resources. If 2-1-1 is not yet active with your phone provider, you can reach the 2-1-1 call center by dialing 800-427-4626 or visiting the Web site at www.211missouri.org
Some possible suggestions for community resources to consider are:
- Meals on wheels
- Senate Bill 40 Boards
- OATS (transportation)
- County health department
- Church or civic groups
- Community/volunteer organizations
There are many useful resources on the World Wide Web. It would be impossible to list them all and keep them current. To find more information, resources and chat rooms that may assist you in living with traumatic brain injury, you can search by key words such as “brain injury, traumatic brain injury, or head injury” to locate many other useful websites.