Sustainable Care for Cerebral Palsy: Examining the Components of Complex Care and Inclusive Communities

Often characterized by mobility, balance speech, and other difficulties, life with cerebral palsy certainly comes with a lot of challenges – but it is not impossible. With access to essential supports like sustainable care, affordable housing, and accessibility technology, there are meaningful opportunities in a city like Toronto to build an inclusive community for individuals with cerebral palsy.

The case for inclusion and accessibility is strong, growing more pressing every day. Cerebral palsy is the most common motor disability in childhood, which requires a strong support system that is embedded in an inclusive and accessible community. This means, individuals and their families should have access to therapies, assistive technology, and affordable care and housing in order to thrive.

When fully supported, individuals with cerebral palsy can take active part in an inclusive, neurodiverse society where they can develop skills and talents, access opportunities for learning and employment like their peers, and model the strength of genuine diversity and inclusivity – a measure that still currently overlooks the needs of persons with disabilities.

Let’s take a look at the components of a sustainable care model for individuals with cerebral palsy that includes affordable housing and opportunities for independent living:

Therapies for Cerebral Palsy

Typical care models for cerebral palsy include a regimen of therapies that target physical, behavioural, and speech challenges faced by individuals and their families. These therapies form part of a coordinated treatment plan that aim to reduce the impact of disability and the likelihood of developing associative conditions.

A well-rounded, non-institutional therapy regimen provides not only physical benefits, such as managing spasticity, contractures, and muscle tone, but also improves quality of life, thanks to mental, emotional, and social benefits.

Therapy regimens for cerebral palsy include physical therapy, occupational therapy, behavioural therapy, and speech and language therapy. These can also be implemented along with surgery, assistive technology, and complementary drug therapies and interventions. There is also a family-centred care model which recommends counseling for parents and caregivers to support their health and well-being, as well as nutrition education to ensure that dietary needs are met.

Assistive and Accessibility Technologies

Also known as adaptive technologies, these devices are designed to improve the capabilities of individuals with cerebral palsy. With various improvements in technology over time, these devices and equipment have become increasingly powerful in helping individuals thrive and improve their quality of life. These break down barriers that individuals with cerebral palsy face at home, school, and in the community, and serve as an important step forward to achieve equal opportunities for success.

Here are commonly used assistive technologies by individuals with cerebral palsy:

  • Mobility: These include wheelchairs, scooters, walkers, orthotics, and walking aids like special footwear. These mobility devices help reduce the physical challenges of cerebral palsy, and promote mobility and better balance and posture.
  • Communication: Many individuals with cerebral palsy face speech and language difficulty, which impacts their ability to express themselves and interact with others. Adaptive communication devices such as picture books, writing and typing aids, voice synthesizers, and other software can aid in producing speech, facilitating social relationships, and building self-confidence.
  • Environmental: As cerebral palsy impacts motor function, many individuals face challenges in interacting with, and controlling their environment. Tasks such as turning on lights, TVs, and other appliances require coordinated motor function to complete. Touchscreen and voice-activated controls can make these environments accessible.

Home Modifications and Universal Design: Towards Greater Accessibility

Sustainable care and inclusivity start at home. This is where we live and spend most of our time in, so it’s all the more important for individuals with cerebral palsy to be supported and have their needs met in their most vital environment. But with most homes still built without accessibility features, modifications are necessary to remove environmental barriers for persons with disabilities, and promote independent living.

Types of Home Modifications

Depending on an individual’s needs and their family’s capabilities, residential care facilities may be the optimal choice for individuals with cerebral palsy. These homes are increasingly built with accessibility features to ensure that residents are supported where it matters most. Common home modifications include:

  • Ramps for wheelchairs and walkers
  • Interior lifts for multi-storey residences
  • Lower bathroom sinks
  • Ample furniture spacing to accommodate mobility devices
  • Adaptive access and appliance controls
  • Grab bars with reinforced walls
  • Lever door handles and automated openers.

It’s important to keep in mind, though, that home modifications are added after the fact: these are additions to existing built environments that were not originally designed for persons with disabilities, and as a result tended to isolate and exclude them from participation. While home modifications are a major positive step towards accessibility, it’s also important to think of design sustainability by centering inclusivity in the process.

Breaking Down All Barriers with Universal Design

Universal design is the emerging standard for building and environmental design and production. Rather than modifying built environments, it pushes designers and contractors to design spaces with universal access in mind to begin with, along with appropriate, built-in safety features. Universal design ensures that homes, residential care facilities, and public spaces are accessible to all persons regardless of ability and age-related obstacles.

Adopting universal design is the physical expression of an inclusive community: it creates effective, concrete mechanisms for individuals with cerebral palsy and other disabilities to occupy the same public and private spaces, and access services and supports that are defined by these shared environments.

The Future of Complex Care for Cerebral Palsy: Affordable Housing and Independent Living

In an inclusive society, the ultimate goal is sustainability: how our communities are built and sustained to support the needs of all individuals, particularly the complex care requirements of persons with cerebral palsy and other developmental, physical, and even invisible disabilities. This orientation towards care starts at home – the place everyone, regardless of ability, should be able to call their own, and where access to essential supports like safety, accessibility, and home-care assistance is rooted in.

The Fight for Affordable and Inclusive Housing

In a real estate hotspot like Toronto where housing affordability is an ongoing struggle, we need to examine the unmet needs of individuals with developmental disabilities like cerebral palsy. Often cited as the primary barrier to housing, affordability is only one part of the equation in the barriers faced by persons with disabilities.

Access to housing is a basic human right, but it is inclusivity that defines not only who is able to afford a home, but the complex care requirements and accessibility features needed to promote safety, access public transit and employment, and thrive in the community. These systemic barriers are only exacerbated by disability supports that end once individuals transition from childhood to adulthood, leaving them with limited resources to afford to live independently and access meaningful opportunities for stability and success.

Making Independent Living Possible for Individuals with Cerebral Palsy

Despite difficulties with mobility and mobility, individuals with cerebral palsy can live independently – with adequate supports for quality of housing and participation in the community. This is the core tenet of transitional care: to prepare individuals for independent living by building their skills, abilities, and confidence to access opportunities for growth and the agency to determine how communities should be oriented, as in the case of a reverse-inclusion model.

So, what does independent living look like for persons with disabilities? At the core of this is affordable housing that is embedded in an inclusive and accessible community. Here, they should be able to access resources for:

  • Education
  • Job training and inclusive hiring standards
  • Financial literacy
  • Access to public transportation
  • Mobility in an accessible community for education, employment, and leisure
  • Opportunities for civic engagement, and more.

Central to independent living is choice: placing a premium on an individual’s ability to choose where and how they want to live – whether in a single-occupancy unit, with their families, or within a community-based group home with assistive living features – along with the supportive services they require. All of these require a strong commitment from various sectors of society, chief among which, our leaders who must legislate these housing and community-building standards, and allocate resources towards realizing an inclusive community for all.

Are you or a loved one living with cerebral palsy? Let’s talk about complex care needs and the importance of breaking down barriers to build an inclusive community. At Safehaven, our goal is to provide affordable and inclusive housing, with opportunities for independent living. Call us at 416.535.8525 or contact us here for more information.