This article is Part II of a series. Please see Who Moves? Part I for background discussion leading to this article.
The Shared Living Guide
As state developmental disability agencies are beginning to replace the terms Adult Foster Care (AFC) or Host Family Home with Shared Living, many advocates are concerned that this more palliative terminology encourages individuals, families, and service providers to choose a residential model that saves the state money but may not be in the best interest of the individual with intellectual/developmental disabilities (I/DD) or autism.
In searching for the origin of this term within the realm of publically funded supports for individuals with I/DD, the Shared Living Guide of 2011 is a stand-out resource. This publication by the National Association of State Directors of Developmental Disability Services (NASDDDS) is written for “state developmental disabilities (DD) agencies and for affiliated government entities responsible for designing and managing services.” In the guide, Shared Living is described as a new way individuals are supported.
In the introduction, the guide states that Shared Living “… has at its foundation the concept we know as foster care – an idea about caring for children that was imported to the colonies from England. But shared living is more than foster care because it also has, as its primary intention, the building of lifelong relationships – based on the foundation of person-centered thinking and self-determination.”
The emphasis on support growing from personal relationships is an important positive change. Much of our long-term support system has become a race to find folks to “clock-in and clock-out” with care recipients getting lost in the shuffle of high turnover due to poor job quality and quality of direct support staff. Yet, upon further reflection, the following concerns emerge:
- Lack of discussion on the shift of systemic standards and accountability to warrant a change of terms that does not clarify the already daunting maze of housing and support arrangements.
- The non-hierarchical expectations of shared living as described in the guide cannot be achieved in an inherently unequal power relationship of a Host Family Home/Adult Foster Care setting.
By converging terms, are we creating barriers to the private development of more sustainable supportive housing options?
Changing Rhetoric Will Not Influence Outcomes
When an individual with I/DD “ages out” of the education system, the alphabet soup of acronyms and the turbulent waters of state-specific public supports is difficult to navigate for those with graduate degrees, let alone an individuals with I/DD. The guide suggests that shared living is not “traditional foster care,” but does not explain the terms different in practice.
The term Family Host Home/AFC describes a situation in which a family is compensated for inviting someone to move into their home and hosting him as a member of their family unit. Federal tax code and the Job Creation and Worker Assistance Act of 2002 use the term Foster Care rather than Shared Living as it offers a tax benefit for inviting a non-relative into one’s home.
Unlike what the guide suggests, Shared Living is more appropriately used in situations where an individual with I/DD has ultimate control over his home, can select his roommates, can charge rent and/or offer a stipend, and reserves the right to ask his roommate to leave if needed or desired.
Before lumping the terms Host Family Homes/AFC and Shared Living together, let’s consider the following questions:
- How does one evaluate the intention of a Shared Living provider (as opposed to a Host Home/AFC provider) who desires a “shared living experience of mutual respect” if a Shared Living provider has the same financial incentive as a Host Home/AFC provider?
- Does the Shared Living provider have the sole power to ask the person with I/DD to move out as in a Host Family Home/AFC arrangement?
- If there is a new term needed that describes another shift in support, how do the accountability standards compare for Shared Living providers and Host Family Homes?
- How many Host Family Homes does an individual typically live in before finding the right fit? Do individuals with I/DD move more or less when they rent or own their own home equally with their chosen Shared Living provider?
- How does an undesired move from a Host Family Home/AFC impact the quality of life of individuals with I/DD who must now find another Host Family Home/AFC? Do they have the option to access a waiver to live in another residential model without going to the end of the waitlist?
- What is the impact on the relationship between an individual with I/DD and their Shared Living provider when the individual with I/DD controls the home and can request their provider to move out at any time? What about in comparison to when they can be asked to move by their Host Family Home/AFC provider?
- In the case of Host Family Homes/AFC, individuals with I/DD may be fearful to speak up for themselves or report abuse of they are unsure as to where they may live next. Would this be the case if they had the authority to ask their Shared Living provider to leave their home?
- Why has the term Shared Living been used differently for the I/DD population than how it is used for the elderly who maintain control of their home and can ask their roommate to leave?
Without research or further evidence about how Shared Living is different in practice than a Host Family Home/AFC, the need to combine these two very different housing and support models into one term seems unnecessary. Merging terms only further confuses those who are already trying to understand and navigate a maze of waivers and housing options.
Real Power Shifts Come with Real Protections
The Shared Living Guide suggests that Shared Living is not traditional Foster Care and upholds the importance of “a mutual experience:”
“The term shared living invites people to have an experience – rather than to work at a job or provide a service. And ‘share’ means just that – not allow, permit, provide – but, as the Thesaurus offers, to ‘communicate, disclose, let somebody in on.’ This concept of sharing presupposes a mutual experience not a hierarchical one. Shared living presupposes mutual respect.”
In addition to rejecting the idea of hierarchical relationships, the guide argues in favor of a balance of power and authority:
“Shared living is also about shifting the balance of power. Done right, with a strong focus on the individual, shared living can alter – indeed eliminate – the power relationship. In true shared living, both the individual with a disability and the person living with him or her gain mutual benefit, living as equals in the same household.”
Populations inside and outside of the I/DD community describe Shared Living with mutual relationships at the core. Yet, in intentional communities, cohousing, co-living and shared living adapted for for millennials and seniors, all residents have at least equal power and control over their home and/or community – an important distinction.
When individuals with I/DD live in a home where the homeowner or family is compensated $1,500-5,000 a month and can ask the individuals with I/DD to leave at any time, the described non-hierarchical relationship in the guide is merely theoretical. Person-centered planning and self-advocacy skills cannot guarantee that an individual with I/DD will be able to live in their home for as long as he/she would like. The homeowners have the ultimate say in this living arrangement, and thus, the relationship is inherently unbalanced.
Training and cultural changes can help ensure that respect and mutual relationships are a core value of support providers. One can argue that without the individual with I/DD possessing the authority to ask his or her supportive roommate to move, the power relationship cannot truly be eliminated.
Learn about the challenges, rewards, and advice surrounding houseparents in a shared living arrangement through this informative interview with Desiree Kameka, Project leader of the Autism housing Network, and houseparents from Sunridge Ranch.
Stability and Sustainability of Shared Living vs. Host Family Homes
According to the guide’s descriptions of programs from multiple states, Pennsylvania reports “that out of 842 individuals in shared living, the length of relationships is remarkably stable, particularly as compared to staff turnover rates in other residential settings. They found that: 62 individuals shared the same situation for 5 years, 126 individuals shared the same situation for 10 years, and 75 individuals shared the same situation for 15 years.”
While consistent support providers may provide much more short-term stability, most would not consider moving every five years stable. Building relationships and finding employment, friends, a place of worship, a favorite coffee shop, and community center can take several years. How many times should people repeat this process before their spirits runs dry? For those on the autism spectrum, who largely thrive and rely on routine, this sudden shift of schedule could cause an individual to go into crisis every time they have to switch homes.
As a best practice, the guide says that “shared living must also provide reasonable financial resources to assure stability.” Again, this system of financial control relegated to neurotypicals and/or able-bodied persons feeds into the existing practice of Host Homes/AFC without any actual change in the financial stability or sustainability of the individual with I/DD. Even more troubling is a state promoting financial incentives to make this choice more appealing to providers than other choices an individual with I/DD may prefer.
The guide states:
“Director Stenning set up a series of incentives – from half the saving realized when an individual moves from a more costly placement into a shared living arrangement. Once an agency has been involved for six months, eighty percent of the saved amount is paid to the agency moving an individual out of a group home and twenty percent is paid to the agency providing the new home. These incentives are part of DBHDDH’s efforts to promote shared living as, ‘an important alternative to group homes since in the last analysis those who participate seem to thrive and the cost is half of that of a group home placement.’”
Just because some individuals with I/DD thrive in an Adult Foster Care placement does not mean this is the best choice for others. Individuals with I/DD need more choices, not less, and these choices shouldn’t have a hidden financial agenda attached to them nor a stigma that undermines individual preference.
Changing terms isn’t helpful without real systemic change. Instead of paying $1,500-$5,000 per month to a neurotypical family to have an individual with I/DD live in their home (plus additional funding for long-term support services provided by others), why not invest that same funding into helping the individual with I/DD pay rent/mortgage? Why not assist individuals in selecting and/or excusing the supportive roommates of their choice? Why not give individuals with I/DD the authority to offer the stipend? This would allow individuals with I/DD to share their homes and aligns the term Shared Living with how it is defined and practiced within the aging population.
As the Autism Housing Network continues to grow and highlights of local community options our national housing crisis, states must actively partner with families and community organizations who want to invest in housing for their loved ones and citizens with I/DD. States must expand access to self-directed (also called self-determination or consumer-directed) waivers or even AFC funding streams, but ensure that money follows the person (not a provider). This gives control to the individual with I/DD and/or their representative. Directing support funding and housing control through the individual with I/DD instead of a neurotypical support person or agency will drastically change the power relationship of direct support staff and ensure housing stability in a fluctuating market.
Summary
Using Shared Living as a euphemism for Family Host Homes/AFC is inappropriate as the power structure and stability of one’s housing hinges on the relationship to his neurotypical landlord and is not an equally shared arrangement. States should continue to act on the following statement from the guide:
“Person-centered planning can only really occur in a person-centered system…thus commitment to person-centered planning means a commitment to a person-centered system.”
Developmental disability systems and policy should not try to squeeze down terms based on theory, but, instead, use more accurate terms that reflect expanded opportunities. States must focus on accountability of the broad range of options for a broad range of people in outcomes measured by the quality of life of individuals with I/DD. Individuals with I/DD need to be meaningfully informed of all of their options, and, in doing so, we must provide clarity between the terms Host Family Home and Shared Living. Individuals with I/DD must understand the pros and cons of those two choices in order for them and their person-centered planning team to make these important, life altering decisions.
About the Author
Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism Foundation
Desiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.
You Aut to Know: Grieving with Autism
Finally someone puts my thoughts in black and white. We need to encourage and demand clarity and total transparency of the terms the states use.