Navigating Housing and Support Services for Severely Autistic Individuals: Challenges and Advocacy

Severe autism, often accompanied by intellectual disability and life-threatening seizures, presents unique challenges for individuals in accessing adequate housing and support services. This article explores the difficulties faced by severely autistic people and highlights the importance of advocating for better support and housing solutions.

Challenges in Accessing Support

Individuals with severe autism often require significant support to navigate daily life, from communication to accessing services. For instance, an individual with Autistic Spectrum Disorder (ASD) level 1 mentioned in the context faced difficulties in acquiring support from a social worker.

"I am autistic. ASD level 1. I need someone to champion me who knows how to deal with official people and knows how to cut through all the red tape. I AM INCAPABLE OF DOING IT ON MY OWN."

This individual emphasizes the critical role of a mentor in guiding them through complex administrative processes. Many people with severe autism depend on such assistance to advocate for their needs effectively.

Role of Community and Voluntary Organizations

Volunteer case workers play a crucial role in bridging the gap between the individual and the services they need. A housing association charity supported by volunteers can provide invaluable assistance. However, the process can be overwhelming, with many steps required to achieve goals.

'A housing association charity took me on. The volunteer case worker worked with me for a long time. Maybe 6 months. They did not provide me with housing. The volunteer did find out who I needed to contact and sat down with me to assist with phone calls, letters, and appointments and legal and financial matters.'

While the volunteer support was helpful, it often falls short in providing direct housing or long-term solutions. This highlights the need for more comprehensive support systems that cater to the unique needs of severely autistic individuals.

Consequences of Inadequate Support

The inadequacy of current support services has severe consequences, particularly for those with severe intellectual disability and life-threatening seizures. A case in point involves a person using a Facebook page for severely autistic individuals and their families.

"The problem is that as severely autistic people have been excluded from research, services are now largely not adequate for their needs. Most services and even housing are now aimed at the mild or moderately autistic person."

A disturbing example from this community illustrates the danger many faced. A mother reported that her son died at a group home due to not receiving emergency medication during a seizure. The delay in response from the staff led to the fatal outcome. This tragedy is not isolated; the rate of divorce among families under such circumstances is alarmingly high.

'A lady I know just told us that her son died at a group home because he did not receive his emergency medication when a seizure started. She had to go back to work because her husband had divorced her. This happens in over 90% of marriages under these circumstances. So she had to send him to a group home on weekdays. She had instructed the staff and given them the medication, and they simply did not give him his medication. He was supposed to have the medication a minute into the seizure. Not only did they not give him his medication, they didn't even call an ambulance for 30 minutes. Her son died at the hospital.'

Advocacy and Solutions

To address these challenges, there is a need for greater advocacy and policy changes. Ensuring that support services are tailored to the unique needs of severely autistic individuals is crucial. This includes:

Increased Funding for Specialized Support Services: Allocating more resources to create and maintain specialized programs for severely autistic individuals and those with intellectual disabilities. Training for Service Providers: Ensuring that all service providers, including housing associations, are trained to recognize and address the needs of severely autistic individuals effectively. Community Awareness: Raising awareness about the challenges faced by severely autistic individuals and advocating for their rights within the community.

By advocating for systemic changes and supporting individuals in navigating complex systems, we can help ensure that severely autistic individuals receive the support and housing they need to thrive.

Conclusion

Severe autism presents significant challenges in accessing adequate housing and support services. Advocacy is essential to ensure that individuals receive the care and support they need. Through targeted policies, training, and community awareness, we can work towards a more inclusive and supportive environment for all individuals, especially those with severe autism and intellectual disabilities.