Cerebral Palsy: Planning for the future after a diagnosis
By Ability Central
14 February, 2023
Cerebral Palsy (CP) requires a lifelong plan. Learn about the resources available, what to expect at each stage, and how to find support.
Cerebral Palsy (CP) is a permanent condition, which means the diagnosis requires a long-term plan. In this article, Ability Central will address these concerns, including:
- Does the Americans with Disabilities Act (ADA) cover Cerebral Palsy (CP)?
- What healthcare options are available for Americans with CP?
- How should a caregiver plan as a child with CP moves into adolescence?
- What unique challenges are there as a person with CP becomes an adult?
- What is the benefit of a support group, and how are they found?
Does the Americans with Disabilities Act (ADA) cover Cerebral Palsy (CP)?
The Americans with Disabilities Act will not only protect a child with Cerebral Palsy, but it aims to protect everyone with special needs. It is not intended solely as a workplace or ‘adult’ law but helps any American with special needs. This can include avoiding discrimination even at the level of selecting a daycare.
See the government website for more on the ADA and what it covers.
What healthcare options are available for Americans with CP?
According to the Centers for Disease Control and Prevention (CDC), the lifetime cost of care for a person with CP is almost $1 million. Fortunately, the US government offers several options to help with those medical expenses.
- Medicare covers people with permanent disabilities and those 65 years old or older.
- Medicaid covers people with disabilities who have lower incomes.
- Children’s Health Insurance Program (CHIP) offers health coverage for modest-income families who do not qualify for Medicaid.
- The Affordable Care Act (ACA) may also assist those who qualify.
For more information on health insurance options, contact United Cerebral Palsy (UCP).
How should a caregiver plan as a child with CP move into adolescence?
Kids Health offers a step-by-step approach to planning as a child with CP grows into a teenager, including:
- Registering for state benefits
- Tackling issues at school
- Preparing for long-term care
- Filing legal paperwork
- Addressing issues of sexuality
- Connecting with the right doctors and specialists
What unique challenges are there as a person with CP becomes an adult?
The developmental delays accompanying CP can take a toll on the body as the person moves into adulthood. This could cause several medical issues as the heart, lungs, and connected systems age prematurely. In addition, adults with CP may struggle with issues including:
- Work-related challenges
- Depression
- Post-impairment syndrome
- Arthritis
- Pain
The Cerebral Palsy Foundation (CPF) can help adults with CP, and their caretakers prepare for these and other challenges.
What is the benefit of a support group, and how are they found?
The rate of depression is three to four times higher in people with a disability such as CP. A support group can help the person and their family:
- Exchange ideas on the latest research and technologies
- Share personal experiences
- Connect with individuals with the same disability
- Learn from experts in the field
Support group options include:
- Cerebral Palsy Worldwide is a Facebook group “for people with CP to meet and share stories, frustrations, and anything on their mind.”
- Inspire connects patients, families, friends, and caregivers for support and inspiration.
- Mommies of Miracles is the world's largest virtual support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities.
- My CP Forum is an online research and discussion group.
- Only Adults with Cerebral Palsy is a Facebook group for adults 18 and over diagnosed with CP.
- Special Needs Moms for Moms is a social network for families of children with special needs to connect, find information, share and offer support, and be inspired.