7 Things I Learned as a Newcomer to the I/DD Community from Professionals

Life Services Alternatives (LSA) hosted a virtual summer speaker series, I/DD Topics and Trends, in which they featured a professional within the I/DD community. Through many unique topics, attendees learned invaluable insight into the processes for helping their developmentally disabled loved ones plan for the future and live life to the fullest. LSA’s Executive Director, Dana Hooper, joined the speakers in an engaging fireside chat and provided insight from their experience serving the community.

1. The I/DD Community’s Primary Obstacle

CEO of Ability Path, Bryan Neider spoke about how the I/DD community is challenged with the underfunding of the California state budget. As of June 28, 2021, State legislatures changed the funding to be spread out over the course of five years instead of the initially estimated three years. However, underfunding remains an issue.

2. What does underfunding mean for direct support professionals (DSP)?

DSPs are an integral part of life for individuals with I/DD. They work directly with them to support participation within their communities. It’s hard for the voices of DSPs to be heard and without funding, these workers can’t be adequately paid. Grants and donations can only do so much, which is why the deficit of the rates are so crucial. 

According to the study that the State paid for, the I/DD community has been underfunded for the last twenty years. The gap identified was roughly $1.8 billion, which is a 20% operating deficit.

3. Factors to Consider When Looking for Housing for an I/DD Loved One

In her book “Ability Innovation,” Astri Doub describes her search for a living arrangement appropriate for her I/DD brother, Robb. 

She cited four core areas that distinguish a high quality supported living home:

  • Design of the house: It can take on different forms, but Doub primarily focused on design empathy (i.e. the wall colors)
  • Staff: Doub emphasized cultivating positive relationships with staff. Her biggest fear is her brother getting used or being uncomfortable and with Robb being nonverbal, his relationships are different and has to be facilitated.
  • Culture: When touring a home, Doub makes sure to ask the questions, “How can I find a home here? What can I do? How can we connect with neighbors?” A home is more than just a house.
  • Procedures and programs of the organization: Some options are, existing service providers like LSA, and finding an opening in a home, creating your own supportive living environment with the help of an organization, and community living settings with pre-existing homes. 

Funding is important, but Doub didn’t include it because it differs state to state. Keep in mind that the home a 20 year-old lives in might not be the same when they’re 40. Just because you’re looking for a specific type of housing, doesn’t mean factors that go into finding “normal” housing don’t also apply to I/DD adults.

4. Advice for Families Who are Starting to Look for Housing and Services

National Coordinator of Together for Choice, Ashley Kim Weiss, emphasized starting early and not to wait until their child is 21 because it’s already too late. She suggested starting research early, talk to other families, know your rights, and don’t take “no” for an answer. 

Weiss notes that families should be open minded about geographic preferences and not restrict their already limited options, to strictly in their vicinity. She understands that families want to be close to their child, but that shouldn’t be a deal breaker. With how limited openings are, families shouldn’t restrain themselves.

5. Challenges Families With I/DD Loved Ones Face When Looking for Care and Housing

By the time families realize that they need to start looking, it’s already too late. Their children are legally adults and are out of the IDEA program. This leads to families looking for care, only to be faced with limited options due to the lack of funding for I/DD adults. 

Additionally, there’s a gap between what the families want and what’s realistically available. Most of the quality homes are full and don’t have annual openings like a school. These adults go to the program and stay as long as they can, which means no natural openings unless somebody passes away.

6. Self-Directed Services and Self Determination as a Plan for I/DD Individuals

Founder of NeuroNav, Kim Schreiber spoke about how there’s been a trend towards giving people in the I/DD community with an existing budget some control over that. This falls under California’s Self-Determination Program (SDP) in which I/DD adults are provided with a budget for the year that they can allocate as they choose. 

For example, take the traditional budget that could only be used for selected pre-approved providers. Through self determination or self-directed services, individuals can open Pandora’s box of all different services in their area. Maybe it wasn’t possible to use some of their funds from the Regional Center for certain activities or certain groups in their community, like the YMCA. Individuals aren’t limited to certain options and it changes the possibility of what they can spend that really supports them in being their full self.

Person centered planning is a process that’s in the same realm. This practice puts the disabled individual at the center of the planning. It flips the old planning process from trying to fit into what already exists to, “What do you want?” This system empowers disabled individuals to take control of their future, build advocacy skills, and have services work for them.

7. Housing Options That are Available to Adults With I/DD

Director of the Autism Housing Network, Desiree Kameka Galloway listed a few. The first one being individuals can live in their own home and choose a service provider to supply them with daily support. The challenge with this is even being able to afford housing. Some families are able to purchase a home for their loved one, while some have access to the Housing Choice Voucher where they can live in an affordable housing community and choose their own service provider and how they access their services. 

The other option is that they can live in a provider’s home similar to a host home and that’s sometimes called a Provider Controlled Setting. Galloway herself was a host home provider and hosted a young man on the autism spectrum for a few years.

Housing can be a tiny home that’s added to a family’s property, a typical apartment building, or an apartment that’s in a planned community. It’s important that in the future, we make sure that people have various choices, so that they receive the support they need in the home that they want to live in, in the community that means most to them.