Living on Your Own After Spinal Cord Injury
Living on your own after spinal cord injury (SCI) can be challenging. Often, both the person with SCI and the family members or caregivers have to make adjustments to their home and lifestyles. Navigating the complex system of resources can be frustrating for everyone. It is important for you to know about services that might help to support your needs.
After SCI it is also important for you to advocate for yourself. Case managers and clinical staff at the UPMC Rehabilitation Institute can help you navigate the system.
There are a multitude of services available to persons with SCI. Unfortunately, eligibility for services may vary based on age, income, assets, and other personal demographics. If you were injured on the job, then workers' compensation may assist with some of your services. If you are returning to school or to work, you may be eligible for additional services. Some persons with SCI may be eligible to receive financial support via Social Security.
A few examples of services and resources that exist include:
There are multiple waiver programs available throughout the state of Pennsylvania. To determine if you qualify for any of these programs, or to investigate waiver programs outside the state of Pennsylvania, please contact your SCI physician for more information.
- You may qualify for the Attendant Care Waiver (state funded Act 150 program) if you live in your home (in Pennsylvania), meet the level of care for a skilled nursing facility (as determined by your physician), are between the ages of 18 and 59, and are capable of supervising attendant care workers. Benefits may include personal assistance and other goods and services.
- The PDA Waiver Program is a Medicaid home-based waiver program provided to persons 60 or older through the Pennsylvania Department of Aging. You must be eligible to live in a skilled nursing facility (as determined by your physician) and meet certain financial requirements.
The Pennsylvania Independent Enrollment Broker helps to streamline the application process for several waiver programs in Pennsylvania. Persons with SCI who are 18 to 59 and applying for Attendant Care, COMMCARE, Independence, OBRA, the 0192 (AIDS) Waivers, and the Act 150 Attendant Care Program, or persons over age 60 applying for Area Agencies on Aging programs, may call the toll-free hotline, 1-877-550-4227, to begin the eligibility/enrollment process.
Transportation services vary by location. Some transportation services will transport you to or from doctor appointments, while others will transport you other places. A UPMC Rehabilitation Institute staff member can assist in researching transportation options for your county.
Assistive Device Loan Program
The Pennsylvania Assistive Technology Foundation offers loan programs for assistive devices. Applicants must meet eligibility requirements. A UPMC Rehabilitation Institute staff member can assist you in determining what loan programs may be available.
Private Duty Nursing
Private duty agencies are private (for-profit) companies that provide in-home nursing care for a fee. Their services are not covered by insurance. When deciding if this option is feasible for you, it is important to ask if the agency requires a minimum number of hours, and to determine the cost of care. We recommend that you always screen the staff who are referred to you.
Office of Vocational Rehabilitation
The Pennsylvania Office of Vocational Rehabilitation (OVR) provides vocational rehabilitation services to help persons with disabilities return to work. OVR counselors meet with individuals to help identify employment goals, and may arrange for training, support services, and assistive technology to assist the individual in returning to work. For more information, call 412-392-4950 or search www.portal.state.pa.us.
Life Care Planning
Basic life care planning is a process that may include referrals to waiver programs, a referral to the Office of Vocational Rehabilitation, getting an insurance chronic case manager assigned, and researching resources available to you in your home county. There are many resources available to help persons with SCI plan for their future.
In addition to basic services, there are private, for-profit companies that can help create complex life care plans. UPMC is not affiliated with and does not endorse any life care planning companies.
Personal Care Assistants
Some persons with SCI may qualify to have personal care assistants. The need for a personal care assistant typically varies with the level of injury. For example, a person with paraplegia may be less likely to need a personal care assistant than a person whose arms are also weak from SCI (tetraplegia or quadriplegia).
Depending on age, financial status, and other factors, a person with SCI may qualify for funded personal care assistants, or may choose to pay out of pocket for assistance. In either case, it is important for the person with SCI to know how to hire, fire, and manage caregivers.
It is always recommended that you reach out to your family, friends, SCI physician, or UPMC Rehabilitation Institute case manager with any questions or concerns related to managing your personal care assistants. For more information about management of personal care assistance, please contact your SCI physician.
Respite care is a short-term, temporary break for caregivers who take care of family members at home. Sometimes it may be beneficial to both the person with SCI and the caregiver to have a short break from the home situation. Respite care is often completed at skilled nursing facilities. Should you have any questions about respite care, please talk to your SCI physician.
For more information about programs or services, consult with your spinal cord injury physician or UPMC Rehabilitation Institute case manager.