Life Away from Home

Quick Overview

Joseph, a young man with Angelman Syndrome, moved out of his family home before his 21st birthday to gain independence. His transition was carefully planned using person-centred planning, a requirement under California’s Lanterman Act. After moving out, Joseph’s language skills improved, highlighting the positive impact of independence on individuals with disabilities. However, traditional day programs and employment options were not suitable for him, so individualised programs were created with the help of The Arc of San Francisco. Community involvement, safety, independence, meaningful employment, and family support were all crucial aspects of Joseph’s life. The speaker, Joseph’s mother, emphasised the importance of dreaming big, advocating for individuals with disabilities, and creating a supportive community. Despite challenges in finding appropriate services and supports, Joseph had positive experiences, including inclusion in a high school basketball team. The speaker concluded by encouraging the audience to keep dreaming and looking ahead for their loved ones.

Moving out of the family home is a big transition and planning is important. Joseph, who has Angelman Syndrome, moved out before his 21st birthday to have more independence. Living at home was difficult for Joseph because he couldn’t make his own choices.

Person-Centered Planning

Person-centered planning is important for creating a life where individuals can make their own decisions. In California, the Lanterman Act requires individualized plans based on the individual’s wants and needs. Joseph’s move was planned carefully, including setting up his apartment with familiar items.

Improved Language Skills

After moving out and having more control over his life, Joseph’s language skills improved. This highlights the positive impact of independence on individuals with disabilities.

Day Programs and Employment Options

Day programs and employment options may not be suitable for everyone with disabilities. Joseph, for example, didn’t have the fine motor skills or attention span for traditional day programs. The Arc of San Francisco helped create individualized programs for Joseph.

Community Involvement

Community involvement is an important aspect of a fulfilling life. It can include activities like music classes, volunteering, and going to college. Building friendships and relationships with staff is also crucial for individuals with disabilities.

Safety and Independence

When choosing living arrangements, safety and independence are important considerations. Gated communities may not be the best option for individuals with disabilities. Instead, community involvement can include senior centers, libraries, and other local organizations.

Meaningful Employment

Employment options should be meaningful and tailored to the individual’s skills and interests. Communication is key in creating and maintaining community involvement.

Dreaming Big and Advocating

Dreaming big and advocating for individuals with disabilities is important for their future. Living away from home and separating oneself is difficult and almost impossible without proper support. There is no specific time when someone is ready for independence, so it’s important to provide ongoing support.

Importance of Family Support

The speaker emphasizes the importance of family support and is disappointed by the low turnout at the conference. While the Angelman Syndrome Foundation provides valuable research and resources, family support is crucial. The speaker shares her experience of connecting with other families and learning from them.

Creating a Community

The speaker encourages the audience to connect with each other and not feel isolated in their journey. She shares her experience of advocating for her son’s inclusion in school and creating a community around him. Tough decisions regarding education and living arrangements were made.

Positive Experiences

The speaker shares her son’s positive experiences in high school, including being included in a basketball team and playing video games with peers. However, she also discusses the challenges of finding appropriate services and supports for individuals with disabilities.

Looking Ahead

The speaker encourages the audience to keep dreaming and looking ahead for their loved ones. Community involvement, including church and music, is highlighted as important for individuals with disabilities.


The speaker concludes by expressing gratitude to the audience and opening the floor for questions. The audience is from various states including California, Maine, Michigan, New York, Tennessee, Ohio, Indiana, New Jersey, Las Vegas, and West Virginia.

Talk details

  • Title: Life Away from Home
  • Author(s): Pat Hornbecker
  • Author(s)’ affiliation: None
  • Publication date: 2019-10-08
  • Collection: 2019 ASF Family Conference