It is important to understand your options early, as the hospital stay can be very short. You will want to understand what potential next steps will support your loved one's needs medically and clinically. Reach out to a social worker or case worker to understand what options are available. There may be multiple options 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, but it will be important to make sure you have all the information. It will be important as well to look for expertise in disorders of consciousness care no matter what your options may be. Below is a general guide to some potential discharge options.
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
Resource Directory - Search for facilities in your area
From BrainLine
This website is a resource to click or call about finding facilities that specialize in brain injury. They can give you your local state resources as well.
Caregiver Information Center
From Brain Injury Association of America
What do I do if I am told that I do not have insurance benefits for that 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 directly and ask questions and 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 and if they can help you. Sometimes they can advocate as well. It all depends on how the insurance policy was written.
- 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 the facility's eligibility criteria or does not have a bed available?
- Ask the social worker what facilities they have investigated and what is the eligibility criteria. This will help to make sure you understand where your loved one is functioning and what they may need to be doing to get to that discharge option.
- Ask the social worker when the bed may be available and if you want to wait or look for something comparable. The social worker may say the insurance company is saying they will not pay anymore that he/she must be discharged. You can again call the insurance company OR your Employers health benefits person to try and advocate for waiting for the bed to be available.
What types of facilities may be options for my loved one?
These are a list of potential different options and depending on how your loved is doing they may access these options 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 what is available.
Long Term Acute Care (LTACH)
LTACH is a facility that provides more complex medical care. Many persons with DOC s will leave a hospital and go to these facilities. Most of these hospitals 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 in LTACH hospitals, some are located in rehabilitation hospitals, and some are in subacute rehabilitation hospitals. They all have eligibility criteria to be admitted. Talk with your hospital social worker or try googling: “programs that specialize in disorders of consciousness.” Or you can look at some of the facilities that participated in this education project
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 an option.
Family Caregiver Guide: Short-Term Rehab Services in an Inpatient Settinge
From Next Step in Care
Subacute Rehabilitation or Skilled Nursing Facility
These facilities can be options either directly from the acute care hospital or after inpatient rehabilitation. They may provide therapy services but may or may not have the expertise in DoC care. However, it is important to find out as you look at your options.
See below for information about this and how to find the best one.
When Short-Term Rehab Turns into a Long-Term Stay
From Next Step in Care
Below is a website where you can get ratings on how the facilities are doing.
Find & compare health care providers
From Medicare.gov
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. 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
Do all home health companies know how to take care of my loved one?
Many HH 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.
Information about home care and services.
Home Care Guide For Family Caregivers
From UHF Next Step in Care
Information about what things to consider when choosing the right home health agency.
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
Below are some guides to help in understanding in how to manage the services/care once you receive them.
Home Care: A Family Caregiver's Guide
From Next Step in Care
Working With Home Health Aides
This will guide help you to know how to work with your aides.
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 simplify.
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?
Below will help with understanding what the medicines are for and how to know how to take them. This may also help with 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. This type of care is for giving personal care for your loved one’s medical issues which can take some of stress off you. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together. Palliative care is based on the needs of your loved one, not on his or her progress and prognosis. This care is often associated with hospice care, but it is not hospice. This can be provided in a hospital or in your home.
Palliative Care: Definition, Scope, Treatment, Criteria
From Verywell Health
Is palliative care right for me?
The link below provides information on what palliative care is, if it is right for you, and how to get it.
Palliative Care for Caregivers | Caregiver Corner
From Get Palliative Care
What are some palliative care organizations?
Center to Advance Palliative Care (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. CAPC also sponsors the website Get Palliative Care
National Hospice and Palliative Care Organization (NHPCO) offers information for families and caregivers through the website caringinfo.org, including downloadable advance directives for every state.
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 care for end-of-life care. They give medical, psychological, and spiritual support. To better understand the differences between palliative and hospice care, visit the website below:
Types of Care: Palliative, Comfort, Hospice, Bereavement
From CaringInfo
Losing a loved one is very hard, and there can be support for you as well. Below is a website that explains bereavement care:
What is Bereavement Care and How to Find Services
From CaringInfo
What are some other resources for me?
Here is a great place you can call to talk about hospice care:
Hospice Foundation of America
(800) 854-3402