In this section
Advocacy can be a crucial part of care for your loved one. A person in a disorder of consciousness is unable to voice their needs or report mistreatment, making them particularly vulnerable. You, the family member, therefore, become the primary advocate, actively engaging with healthcare teams, inquiring about treatment plans, and advocating for any necessary adjustments to ensure your loved one's comfort, dignity, and overall well-being.
What are some advocacy tools that can help me ensure my loved one is getting the care they need?
You may need help in advocating for your loved one’s rights. There are agencies in each state that may help with this.
State Resources: Information on what is available to you and protection of your rights to access services and get support
Protecting Rights and Preventing Abuse of People with Disabilities
From Administration for Community Living
Disability Services
From USA.gov
Advocacy Toolkit: This is an excellent resource to give you the skills and strategies for becoming a good advocate for your loved one.
Advocacy Toolkit: Skills and Strategies for Effective and Peer Advocacy
From BrainLine
Patient Advocate Foundation: This non-profit organization helps with case management services for both insured and uninsured patients who have chronic, life-threatening illnesses. Programs include assistance with financial aid, access to care, insurance challenges, and cost of living assistance.
Connect with Services
From Patient Advocate Foundation
Abuse and Neglect
There are times when you might think you see or you actually do see someone abuse or neglect your loved one. Or you might find your loved one has unexplained injuries, like bruises or cuts. People with disabilities are at a higher risk for abuse as they cannot always fend for themselves. Below is some information on what abuse and neglect look like and some behaviors you might see if your loved one has been abused.
Recognizing and Preventing Abuse, Neglect, and Exploitation of Individuals with Disabilities and Older Adults
From Special Needs Alliance
If you suspect or witness abuse or neglect, call your local social services department and report this. You can google "abuse and neglect" to find your state’s local agency.