What plans need to be made?
- •Good documentation is essential. You typically have more knowledge of the medical history of the individual with brain injury that others do not have.
- •Making sure the records can be accessed by other selected individuals is vital when you may not be able to provide the information.
- •Run the information by other individuals to ensure that they can read and understand the contents.
- •Tell other family members and close friends the plans and where to find any important records.
- •Develop a flexible and easy system to keep information and records organized.
- •Organize your records into categories, such as personal, emergency, health care, insurance, and community, as depicted below.
- oPersonal information: Full name, birth date, birthplace, social security number, marital status, immediate family, diet, hobbies, special friends, religion, education, guardians, trustees, power of attorney, and funeral arrangements.
- oEmergency information: Contacts (eg, family members, nonfamily caregivers, neighbors), allergies, and physician telephone numbers. Make sure those listed as contacts are aware of the plan and know where to find the information.
- oHealth care information:
- ▪Provider information (name, address, and telephone numbers for current physicians, psychologist, eye care specialist, dentist, and therapists)
- ▪Allergies, current medications and dosage
- ▪Past hospitalizations
- ▪Medical records. Copies of medical records can be very helpful in communicating one’s medical history to other providers. You must request a patient’s medical records in writing before a medical facility can release them. Call the facility and ask them to mail you a release form. Note: Many health care providers charge for medical records by the page. To minimize cost, consider narrowing the request to include: physician admission History and Physical, physician discharge summaries, medication history, laboratory and imaging results, and physician clinic notes.
- ▪Maintain documentation of all interventions and medications tried, even those that were not effective or not tolerated.
- oInsurance information: Copies of insurance cards, social security card, Medicare or Medicaid card, and Veterans Administration benefit card.
- oCommunity information:
- ▪Community provider details include: mental health programs, Department of Social Services, day hospital and similar activities, case management services, and vocational programs.
- ▪Community activities include: church, employment, recreation programs, support groups, or volunteer work. Maintain and frequently update a list outlining the role and contact information for each.
- ▪Transportation resources include: agency name and contact information, payment processes, and where services are used.
Financial and legal considerations
- •It is essential that all families, not just the wealthy, carefully plan estate distribution to secure the fullest benefits for their loved one with a brain injury. Without careful planning, estate assets can make the individual with a brain injury ineligible for government benefits. Estate planning often involves getting good legal and financial advice. Select an attorney who is knowledgeable in estate planning considerations relevant to brain injury and government benefits.2A Special Needs Trust is an option used to create a trust and preserve Medicaid and Social Security Income eligibility without a penalty.US Government Publishing Office
21st Century Cures Act (P.L. 114-255). Section 5007. Fairness in Medicaid Supplemental Needs Trust.3
Five things to consider when setting up a special needs trust.
- Marcus J.
- •The Achieving a Better Life Experience (ABLE) Act of 2014 allows states to create tax-advantaged savings programs for eligible individuals with disabilities.4Look into what your state offers regarding the ABLE Act (www.ablenrc.org).ABLE accounts-tax benefit for people with disabilities.
- •A guardian is needed if the individual with brain injury is unable to make financial, medical, and community decisions. There are different types of guardians.
- oA guardian of the estate is appointed for the sole purpose of managing the individual’s property, estate, and business affairs.
- oA guardian of the individual performs duties related to the care and custody of the individual.
- oA general guardian has responsibility for both the individual and the estate.5
- NOTE: When individuals turn 18, they are in control of their own affairs unless guardianship is arranged.
- •Power of attorney is an option when an individual may have decreased cognitive and functional abilities. In this case, the individual with the brain injury has the ability (capacity) to make decisions and appoints another individual to act for him/her in financial and legal situations.
- •Each state has its own rules regarding legal documents. Consult someone with legal expertise to find out what the rules are in your state.
- •It is paramount to plan for the future housing needs of the individual with brain injury. Many individuals with brain injury live with family members. Others find that the best residence is a group home, supervised living arrangement, or adult foster care. Inheritance or items of monetary value willed to an individual may affect their state or federal assistance and benefits to live in a residential facility or receive other services. This should be considered when planning for the distribution of estates.
When should I begin?
How do I get started?
- •Record and organize all existing personal, medical, financial, legal, and emergency information.
- •Learn the laws of your state to receive maximum benefits and avoid loss of services.
- •Include the individual with brain injury in the planning, discussions, and decision making.
- •Table 1 provides a checklist of important points for the family-member caregiver and the individual with brain injury to discuss and set into action immediately.Table 1Planning for the future checklist
Record Information Done Issues to Consider Notes Personal Medical Insurance Community Emergency Request Records Done Issues to Consider Notes Medical records Legal records Certificates (birth, death, divorce) Plan Done Issues to Consider Notes Future housing Transportation Maintain involvement in important activities and community participation Meet With an Attorney With Expertise in Brain Injury to Prepare Legal Documents Done Issues to Consider Notes Special needs trust Guardianship (if necessary) Power of attorney (if necessary) Will
Is help available?
- •The public library and Internet provide useful information on special needs.
- •Professionals and organizations that specialize in disabilities may offer help.
Where can I get more information?
- •Challenges, Changes, and Choices: A Brain Injury Guide for Families and Caregivers (https://www.biausa.org/wp-content/uploads/Guide-for-Families-and-Caregivers.pdf)
- •Online support groups
- •Government benefits: Benefit Eligibility Screening Tool (http://ssabest.benefits.gov)
- •National Council on Independent Living: promotes the independent living philosophy and advocates for rights and services for those with disabilities. (Address: 1916 Wilson Blvd, Suite 209, Arlington, VA 22201; phone: 877-525-3400; www.NCIL; [email protected] )
- •Commission on Disability Rights (https://www.americanbar.org/groups/diversity/disabilityrights/)
- •Disability Law Directory: assistance in locating an attorney (https://www.legaldirectories.com/lawyers.aspx)
- •A Family Handbook on Future Planning (https://mha.ohio.gov/Portals/0/assets/FamiliesChildrenandAdults/Healthy%20Babies/AlcoholandPregnancy/FASD-family-handbook.pdf?ver=2019-01-15-061516-187)
- •Achieving a Better Life Experience Act (ABLE) Accounts (www.ablenrc.org)
- Caregiving and planning for the future for people with disabilities.(Available at:)Accessed December 23, 2020)
- 21st Century Cures Act (P.L. 114-255). Section 5007. Fairness in Medicaid Supplemental Needs Trust.Accessed December 23, 2020)
- Five things to consider when setting up a special needs trust.(Available at:)Accessed December 23, 2020)
- ABLE accounts-tax benefit for people with disabilities.(Available at:)https://www.irs.gov/government-entities/federal-state-local-governments/able-accounts-tax-benefit-for-people-with-disabilities(Accessed December 23, 2020)
- Guardianship basics.(Available at:)Accessed December 23, 2020)
Supported by the NC Division of Mental Health, Development Disabilities, and Substance Abuse Services to Carolinas Rehabilitation (grant no. 2097) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to Indiana University (grant no. 90DRTB0002) and Carolinas Rehabilitation (grant no. 90DP00840100). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this publication do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.