Maternal and Child Health
The federal Maternal and Child Health Bureau (MCHB) gives money to each state under Title V of the Social Security Act to support, with particular support to children with special health care needs. The state agency responsible for providing services to children with special health care needs may have a different name in each state. However, it is frequently called "Title V Agency". It provides information and referrals, coordinates specialty pediatric clinics, and offers financial assistance and care coordination.
In New Hampshire contact Maternal and Child Health at 800-852-3345 extension 4517 or visit the Department of Health and Human Services website at http://www.dhhs.nh.gov/DHHS/MCH/CONTACT+INFO/default.htm.
Medicaid, another federal program, is administered by the states under Title XIX of the Social Security Act. Medicaid programs are often administered by the state Department of Health and Human Services, the Office of Public Assistance, or the Office of Health Care Financing.
Medicaid provides health insurance to low income and/or "medically needy" people. Eligibility is based on income, but some people may qualify for Medicaid, even if they don't meet the income guidelines. Your family does not have to be on welfare to qualify for Medicaid. "Medically needy" individuals may apply for and receive Medicaid through waivers due to their disabilities or the kind of medical care they need.
The Medicaid waiver programs are called Children with Severe Disabilities (CSD) and Home Care for Children with Severe Disabilities (HC-CSD). They are commonly referred to as the Katie Beckett Waiver. In New Hampshire, the waiver program is referred to as "Katie Beckett" or "HKG/HCCSD" (Healthy Kids Gold/Home Care for Children with Severe Disabilities).
Medicaid covers hospitalization, rehabilitation and outpatient services, prescription medications, medical equipment and supplies, and nursing services. Some medically related services deemed necessary in the educational setting may be covered if they are part of a child's Individual Education Plan (IEP).
When applying for Medicaid, you will be asked to fill out a self-determination form, which asks why you think your child is disabled. Providing medical information regarding your child's traumatic brain injury will support your application. Ask your doctor to send your child's medical information directly to the Medicaid Office.
The age of maturity for Medicaid benefits is 18 years. This means that even if your child receives educational services up to the age of 21 years, your child must reapply for Medicaid benefits as an adult at age 18. If your child is not receiving Medicaid benefits, your child may become eligible at the age of 18, because each applicant is considered a "family of one" at that point in life. This means that parental income and assets are no longer counted.
For information or to apply for Medicaid benefits, contact the Medicaid Office in your state or local area. In New Hampshire contact Medical Assistance Eligibility at 800-852-3345 extension 4238 or visit the Department of Health and Human Services website at http://www.dhhs.nh.gov/DHHS/MEDASSISTELIG/CONTACT+INFO/default.htm.
TIP: When applying for Medicaid benefits, the Resource Facilitation Program of the Brain Injury Association of New Hampshire at can assist you with the paperwork.
Social Security is a federal insurance program that most people think of only as retirement benefits. However, there are three types of Social Security benefits: retirement, survivor, and disability. A worker must pay into the Social Security Trust Fund in order to receive benefits upon retirement, or in the event of death or disability. Benefits are based on the amount of money the wage-earner contributed to Social Security. The disability benefit is called Social Security Disability Insurance (SSDI). SSDI benefits are paid to a worker who becomes disabled. SSDI-Childhood Disability Benefits (CDB) are paid to a child with a disability as long as that child remains disabled.
Supplemental Security Income (SSI) is a benefit program which is not based on a worker paying into the Social Security insurance program. It is meant for people with disabilities and people 65 and older who have limited income and resources. For children with disabilities, the family's income level and number of people in the family are used to determine eligibility. For more information, visit the U.S. Social Security Association website at http://www.ssa.gov/.
Federal Social Security benefits are coordinated through Social Security District Offices within each state. If you are not sure which District Office serves your town or city, call 800-772-1213 or visit the Brain Injury Association of New Hampshire website at http://www.bianh.org/resource/financial.htm.
Developmental Disabilities Programs
The federal government provides funds to states to create agencies to serve people with developmental disabilities (DD). The state agencies coordinate a comprehensive service delivery system for persons with developmental disabilities. These agencies also provide support to their families. Eligibility for services is limited to persons whose developmental disability originated before the person turned 22 years old. Developmental Disabilities programming is part of the New Hampshire Department of Health and Human Services. For your local Area Agency, call Developmental Services at 800-852-3345, or visit the Department of Health and Human Services website at http://www.dhhs.nh.gov/DHHS/BDS/LIBRARY/Fact+Sheet/bds-area-agencies.htm.
Mental Health and Counseling
Many states fund mental health services for eligible residents with low incomes. Services are frequently community based and include residential and related support services, case management, crisis response, rehabilitation, brief hospitalization, medication services, family education, psychiatric services, and supported employment.
For a listing of Community Mental Health Services in New Hampshire, call 800-852-3345 extension 5049, or visit the Brain Injury Association of New Hampshire website at http://www.bianh.org/resource/counseling.htm.
Don't be intimidated by the number of agencies and the new terminology discussed in this section. You are not expected to absorb and understand the whole system. You may not need to interact with all the services described, but knowing they exist gives you a place to start networking for support. In many of these agencies there is a professional whose job is to help you get through the "system". Often this person is called a coordinator or client representative. Try to find a coordinator or client representative who can help you, and build a continuing and supportive relationship with that person.
The Brain Injury Association of New Hampshire can also help you navigate the "system" through their Resource Facilitation Program. For more information, call 800-773-8400 or visit the Brain Injury Association of New Hampshire website at http://www.bianh.org/facilitation.htm.
Guardianship and Inheritance
Looking ahead, there are some long-term concerns. It is very hard for parents to consider who would care for their child if anything happened to them. Guardianship can be an even more difficult question for parents of children with disabilities. It is not easy to find someone who is willing and able to care for your children and make decisions on their behalf should you die, become ill, or disabled. It is not something most people want to think about, but it is very important.
From birth to 18 years old, the parent has the legal authority to make decisions on behalf of a child. Upon legal adulthood, at age 18, that authority is transferred to the child. What happens if the child turns 18 and is not able to make sound decisions? There are several options available in New Hampshire to assist your child in making decisions. The option you select will have a significant impact on your child.
One option is to petition for guardianship. This is a legal process that removes your adult child's right to make decisions and transfers that authority to a guardian. For those who have severe cognitive impairments, this may be the only way to ensure informed decision making, while protecting the child's safety. However, it is important to recognize the consequences to your child:
Because of the serious impact of a guardian, the New Hampshire Guardianship Statute specifies that guardianship must be used only as a last resort. The person petitioning for guardianship must be sure that guardianship is an absolute necessity and must have determined that no other options are available that would permit the person to maintain individual rights. Some of the alternatives that permit a person to maintain rights include:
The alternatives you choose should be determined by the abilities of your child. If your child is capable of making decisions with any of the help described in this section, a guardian may not be necessary or appropriate. In the long run, both your child and you will benefit if the supports you set up allow your child to develop decision-making ability to the fullest. This will permit you to feel more confident that your child will be equipped to manage in the event that anything should happen to you. It also increases the chance that your child can experience the independence that all parents wish for their children. Keep in mind that it is possible for your child to receive more than one alternative at a time. For example, some individuals may require a power of attorney over health care, a power of attorney over finance, and a mentor to ensure that informed decisions are made on all important decisions.
Finally, if you are already a guardian for your adult child, and you feel that a mentor (or some other alternative) would be a more appropriate choice for your child, it is a relatively easy matter to make the change. You can go to the court where guardianship was petitioned, and ask for a petition to terminate the guardianship. In that petition, you can explain that the availability of a mentor (or some other alternative) makes guardianship no longer necessary. If you need additional help with this petition, contact an attorney, the Disability Rights Center at http://www.drcnh.org, or Mentorship, Inc. at http://www.mentorship.us
If you do not have a lawyer and you need legal advice, call the Disability Rights Center at 800-834-1721 or visit their website at http://www.drcnh.org.
Many different agencies, organizations, and professionals have been discussed in this chapter. It may seem overwhelming to you now, but it will begin to make sense after you start talking to others. Within a short time, you will be able to maneuver through this maze of programs and professionals without difficulty. Although there are professionals at each organization whose job it is to help you, many parents find their best information comes from other parents whose child has had a brain injury. Do not overlook the parent support groups as they connect you with experienced parents.
As you talk to people at the different agencies and organizations, it is a good idea to keep a record of who you talked to, how to contact them in the future, and what information they gave you. To help you keep organized, there is a telephone log sheet.
Only families who have gone through the experience of their child receiving a brain injury can truly understand what this means. Your family has had this experience and by necessity learned about brain injury and its consequences for your child. Others will not fully understand because they lack knowledge and understanding of brain injury. The needs of the child with a brain injury are complex and change over time, and each child's injury and recovery are different.
As you seek services for your child, you will meet others who do not fully understand brain injury. Educating others about your child's brain injury is an important role for you to play. Your child's needs are unique, and no one knows them better than you do. No one else will be able to speak about your child's needs as well you can. The education of others will be a continuing process as your child matures and his needs change.
Education is part of the advocating process through which you can build awareness among professionals. By advocating for your child, you can also help match services and programs with your child's strengths and needs, develop partnerships with professionals, and even work toward changing the system. Advocating for your child to obtain medical, educational, and vocational services is a valuable skill for you to learn. You can become an effective spokesperson for your child.
Your family's life today may be different from the one you had before your child's brain injury. Looking back, you may be surprised to see that you have grown through this experience. As you look toward the future, know that you are not alone. Professionals and parents at the organizations and agencies listed in this guide can help you. Reach out to them to build a network of support for your family and child. With the support and help of others, your family and child will be able to set out in a new, rewarding direction.