When your loved one is hospitalized with a severe brain injury, it can be hard to focus on planning for their discharge. But is important to understand your options early, as your loved one's hospital stay may be very short.
Reach out to a social worker or case worker to understand what options are available based on your loved one's needs, your insurance benefits, the facilities' eligibility criteria, and bed availability. Hospitals may try pushing you to make a decision quickly about where your loved one should go next, but it will be important to make sure you have all the information you need to make that decision. It will be important as well to look for expertise in disorders of consciousness care no matter what your options may be.
These resources will help you to ask questions before making decisions.
Guides and Checklists for Family Caregivers
From Next Step in Care
Hospital Discharge Planning: A Guide for Families and Caregivers
From Family Caregiver Alliance
BrainLine Resource Directory
From BrainLine
Search for CARF-accredited facilities in your area.
Caregiver Information Center
From Brain Injury Association of America
Call 1-800-444-6443 about finding facilities that specialize in brain injury. They can give you your local state resources as well.
What do I do if I am told that I do not have insurance benefits for a particular facility?
Insurance companies have specific benefits that determine what they will pay for and what they will not. However, if the social worker says you do not have the benefits for what is being recommended, you can try the following things to advocate for those services.
- Call the insurance company directly and ask questions or find out how to appeal that decision. Insurance companies have what they call criteria for certain levels of care (discharge options), but what we have found is that it does not really take into consideration the complex and specialty needs of people with DoC.
- Call your employer's benefits specialist and let them know what is happening. Ask if they can help you. Sometimes they can advocate as well, depending on how your insurance policy was written.
- Ask potential facilities if there are any options for charity care.
If you do not have insurance, finding discharge options is extremely limited unless a facility is willing to do charity care. Most often you are forced to go home or to a nursing home.
What do I do if the social worker or doctor says my loved one does not meet a facility's eligibility criteria or the facility does not have a bed available?
- Ask your social worker what facilities they have investigated and what their eligibility criteria are. This will help to make sure you understand your loved one's current level of functioning and what improvements need to happen before they can be ready for a particular discharge option.
- Ask the social worker when a bed may be available and if they think you should wait or look for something comparable. If your insurance company is saying they will not pay for the hospital stay anymore and that your loved one must be discharged, you can again call the insurance company or your employer's health benefits person to try and advocate for waiting for a bed to become available in an appropriate facility.
What types of facilities may be options for my loved one in DoC?
There are several different types of facilities that may be appropriate for your loved one when they are discharged from the hospital. Depending on how your loved is doing, they may need a different type of facility at different times of the recovery process. It will be important to reach out to a case manager or social worker to help you understand what those options may be and to find out which ones have space for your loved one.
Long Term Acute Care (LTACH)
LTACH is a facility that provides more complex medical care. Many persons with DoC will leave a hospital and go to these facilities. Most provide some rehabilitation care. It is important that you ask questions about their expertise in DoC care.
Specialized DoC Rehabilitation
There are a few programs around the country that specialize in this care. Some are within LTACH hospitals, some are located in rehabilitation hospitals, and some are in subacute rehabilitation hospitals. They all have specific eligibility criteria in order for your loved one to be admitted. Talk with your hospital social worker to find specialized facilities. Or you can look at some of the facilities that participated in this education project: Shepherd Center, Madonna Rehabilitation Hospitals, TIRR Memorial Hermann, and Craig Hospital.
Inpatient Rehabilitation
Some hospitals have inpatient rehabilitation programs. These programs may take patients who are minimally conscious (beginning to follow some commands). These programs have a variety of doctors and therapists who work together to care for your loved one. Below is a website that can answer questions about this level of care. It is best to talk with your doctor or your social worker to see if this is a good option for your loved one.
Family Caregiver Guide: Short-Term Rehab Services in an Inpatient Setting
From Next Step in Care
Subacute Rehabilitation or Skilled Nursing Facility
These facilities can be options either directly from the acute care hospital (your loved one's first stop after their injury) or after inpatient rehabilitation. They may provide therapy services but may or may not have expertise in DoC care. It is important to find this out as you look at your options. You can learn more at the resource below.
When Short-Term Rehab Turns into a Long-Term Stay
From Next Step in Care
Home Health (HH)
These are agencies that provide care in your home. They provide skilled nursing care, some personal support, and therapy services. These services can be provided after acute care, LTACH, inpatient rehab, or subacute care.
Deciding Among the Facility Options
It is important to understand the things you need to consider before making a decision about which one is right for you as your insurance company will determine how much care can be provided and how long it can be provided. Below is a guide that may help you.
What Do I Need As a Family Caregiver?
From Next Step in Care
Hospital Discharge Planning: A Guide for Families and Caregivers
From Family Caregiver Alliance
Find and Compare Facilities
Medicare.gov provides a website that will allow you to review and compare facilities in your area:
Find & Compare Healthcare Providers
From Medicare.gov
Do all home health companies know how to take care of my loved one?
Many home health programs do not understand how to care for people with DoC. It is important to ask if they will be sensitive to your loved one's needs. Below are some websites that may help to guide you in planning for home healthcare.
Home Care Guide For Family Caregivers
From UHF Next Step in Care
Hospital Discharge Planning: A Guide for Families and Caregivers
From Family Caregiver Alliance
Shepherd Patient and Family Guide
From Shepherd Center
Home Care Management Guides
Managing home health can be a challenge. We hope these guides will help.
Home Care: A Family Caregiver's Guide
From Next Step in Care
Working With Home Health Aides
From Next Step in Care
A Family Caregiver's Planner for Care at Home
This will help you with some ideas on how to plan care of your loved one at home.
A Family Caregiver’s Planner for Care at Home (PDF)
From UHF Next Step in Care
What do I do when home care ends?
Based on your insurance, home care will end when they determine that your loved one no longer needs services or your insurance benefits run out. This can be very overwhelming as there are many things you will need to plan for as you take over care. Below is a helpful guide.
When Home Care Ends
From UHF Next Step in Care
How do I coordinate care?
A Family Caregiver’s Guide to Care Coordination
From UHF Next Step in Care
What kinds of equipment will I need?
Durable Medical Equipment (DME)
From UHF Next Step in Care
What are some tools to organize all that I have to do?
A Family Caregiver's Guide to Electronic Organizers, Monitors, Sensors, and Apps
From UHF Next Step in Care
Setting Up Routines (PDF)
From Shepherd Center
Tips, ideas, and tools for organization
How will I manage all the medicines?
Often with people in DoC, there are many medicines that they may need. Below are some tips that may help you to stay organized.
How do I afford these medicines?
Getting medications at a low cost will be important. Below is a website that tells you the best ways to do this.
Obtaining Medications
From Shepherd Center
Why does my loved one need all these medicines?
The below resource will help you with understanding what the medicines are for and knowing how to give them to your loved one. This may also help you come up questions you may want to ask your doctor.
Understanding Medications
From Shepherd Center
What are the best ways to give medicine?
Includes suggestions for pill boxes, tools for medication reminders, and safe storage & disposal.
Taking Medications
From Shepherd Center
What do I need to be prepared for in case of emergencies?
Safety is very important. Below is some information that will guide you in helping you to make sure your local rescue services know about you. This may give you better response times in case of an emergency.
Emergency Preparedness
From Shepherd Center
Palliative Care
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. Palliative care is provided by a specially-trained team of doctors, nurses, and other specialists who work together. This team provides personal care to your loved one for their medical issues, which can take some of the stress off of you. Palliative care is based on the immediate needs of your loved one, not on their progress and prognosis. This care is often associated with hospice care, but it is not hospice. It can be provided in a hospital or in your home.
Palliative Care: Definition, Scope, Treatment, Criteria
From Verywell Health
Is palliative care right for my loved one?
Palliative Care for Caregivers | Caregiver Corner
From Get Palliative Care
What are some palliative care organizations?
Center to Advance Palliative Care (CAPC)
CAPC has a lot of good information about palliative care and resources. You will see a lot of stories about other kinds of illnesses but not many on DoC. However, palliative care is about quality of life for serious illnesses including DoC.
Get Palliative Care
Search for palliative care providrs on this CAPC-sponsored website.
National Hospice and Palliative Care Organization (NHPCO)
Offers information for families and caregivers
caringinfo.org
Provides guides and and other resources, like downloadable advance directives for every state, to help you as you consider palliative care. Sponsored by NHCPO.
Hospice Care
You may hear about this type of care from your doctors as an option for your loved one. A team of clinicians provides this end-of-life care. They give medical, psychological, and spiritual support. Learn more from the resources below.
Types of Care: Palliative, Comfort, Hospice, Bereavement
From CaringInfo
What is Bereavement Care and How to Find Services
From CaringInfo
Losing a loved one is very hard, and there can be support for you as well.
Hospice Foundation of America
(800) 854-3402
Call this number to talk with someone about hospice care.