The Benefits and Challenges of Housing for People with ASD in a Post-Facility World

Group Homes, a housing model that began in the 1960s and ‘70s, were a tremendous improvement on the dismal institutional settings that they largely superseded. Created by a partnership between the state and “voluntary” agencies, the goal of the group home model was that people with autism and other intellectual and developmental disabilities (ASD & I/DD) would live in homes that looked like others in the community and would attend Day Programs, rather than sleeping in dormitories and spending their waking hours in “Day Rooms.” Forty years later, those of us who seek housing for our adult sons and daughters with ASD & I/DD have a lot to thank the pioneers of group homes for; with over 26,000 people in NY State living in housing funded through the Office for People With Developmental Disabilities (OPWDD), the Group Home system is the primary form of state funded housing for people with special needs. However, today the system is at a crossroads. Many would call it a broken unsustainable system, and we are on the cusp of significant change.

Why is the system unsustainable? Through a combination of high staffing ratios and turnover, real estate costs, administration and other historical factors, group homes have become very expensive. A supervised setting in our region costs approximately $120,000 per person per annum. The labor force of Direct Support Professionals (DSPs) is inelastic and there is a growing demand for their service as the general population ages. People with ASD & I/DD are living longer, and the number of people diagnosed with ASD & I/DD is increasing so there are more people in need of support. Lastly, the people seeking support are less likely to want to live in a congregate setting. Young people leaving school today have spent a large portion of their school career in typical settings, they have no interest in being segregated, or living with people they have nothing in common with in places that are regimented and heavily supervised. Congregate care for a person with sensory issues, a person who is averse to excessive social contact will lead to deterioration in their quality of life and perhaps to medication or seclusion. When well-meaning providers go to the opposite extreme – creating an “Autism” house for example – the deleterious effects of social isolation are just as pronounced.

The good news is that in part due to a combination of compromised budgets and scandals related to overbilling and unaddressed abuse, our state is undergoing a fundamental systems reform, comparable to the change in direction that we took post-Willowbrook. We are embarking on the biggest change in how residential services are provided since the deinstitutionalization movement began over fifty years ago. For these changes to work for people with ASD & I/DD three elements have to succeed.

Group Homes were fashioned and funded along institutional principles. “Voluntaries” – nonprofit provider corporations – are contracted by the state to provide residential services that combine shelter, habilitation and living supports in one facility. However, as long as the provision of a place to live has to be combined with the provision of support services, people with a disability are potentially held hostage. If they don’t like their accommodation and want to change, they can only move within the group home system, and with that move will be compelled to change the people who are delivering their support services. Alternatively, if they like where they live but don’t like the service delivery, they have no choice but to leave their home in order to find better services. They are stuck in the “Company Store” trap. Separating the provision of shelter from the provision of support is vital if we are to move on from the group home model.

Institutional settings are by their nature homogeneous rather than individual. This bias is compounded by the institutional evaluation system used in NY State, the Developmental Disabilities Profile (DDP) which was first introduced in the 1980s. The DDP is a medical model, deficit-based assessment biased to highlight weaknesses. Families are implicitly (sometimes explicitly!) encouraged to stress how needy their son or daughter is in order to achieve the highest level of services (budget). OPWDD is currently testing a new instrument, the Coordinated Assessment System (CAS), which is more functionally based than the DDP. Functional assessment identifies an individual’s support need rather than their deficit, or their diagnosis. For example, if a person needs help with their Activities of Daily Living (ADLs) – cooking, cleaning, hygiene – a functional assessment is agnostic as to why they have that need; it is simply designed to identify the need and to provide a path to budgeting for that need.

A corollary to a functionally based assessment is the second element, an individualized budget, which sets out the cost of support staff, clothing, food transportation and rent that an individual will need to take their place in society, as well as their resources from benefits and employment. An “individual” budget does not exclude the sharing of services, or the pooling of certain resources (e.g. the need to pay rent for shared accommodation with a live-in caregiver) but it is assigned to the person with a disability rather than as a “slot” or a “bed” to a provider agency.

The third essential element to change is that Money should Follow the Person. (MFP). The principle of MFP is that once an individual’s support needs have been identified through a functionally-based assessment, they will be assigned a budget to pay for the supports they need. In our current system funding is provided to agencies which in turn create a menu of services. People with ASD & I/DD avail themselves of the available services from the available agencies. Agencies creating group housing submit a budget to OPWDD that includes their mortgage cost and maintenance, their staffing cost based on the projected needs of the target group and operating and administration costs. Naturally they seek the highest budget level they can argue for. Housing budgets may be periodically increased when the state provides a Cost of Living Allowance, but generally do not change significantly, regardless of changes in the individuals served. The “rate” is not individualized, but is “rolled up” across an agency’s settings. Given the nature of funding and the length of time some houses have been in operation, there is wide variance in the rates different agencies are paid, a variance that is not explained by the different levels of need of the different people served. Medicaid’s Federal paymaster, the Centers for Medicare and Medicaid Services, (CMS) recognizing best practice (and economics) now require that states implement individualized budgets, that the Money should Follow the Person and that the services be as much directed by the person themselves as possible.

These three elements will shape the future of all services, including housing. Consolidated Supports & Services (CSS) is the funding conduit created under the 1915(c) HCBS waiver of 2009 to facilitate self-direction, functionally based assessment and money following the person. Implementation has been slow to catch on around the state, primarily due to the institutional bias embedded in our congregate funding model, but the current reformation underway will eventually require that CSS, or something like it, becomes the norm. OPWDD funding streams for individualized housing will thus become more flexible, but in addition individuals and families need to access the whole range of public and private sources of housing support. These include an individual’s public benefits, like SSI, but also their own earnings as we move to an “Employment First” goal for all. These earnings may be modest and they need to be optimized to ensure benefit continuity but there is nothing that confers self-esteem quite like a paycheck. We need to mobilize family resources. In the past there were strict limits on how family resources could be utilized for support. This was to avoid inequities arising when a privileged family might offer a resource, – a house for example, in exchange for a lifetime of service provision for their son or daughter in a group home. Once the provision of services and the ownership of real estate are separated however, there will be more flexibility around the use of family assets, assets we need to draw on as state budgets will not be expanding to meet the growing need for services. We need to explore models for housing used by the aging community, the long term homeless, communal living, shared living and ways to provide support that is customized to the person rather than to the provider.

The prospects for housing for people with ASD & I/DD can be daunting but they are also exciting. We are entering a new chapter, moving on from the vestiges of the institutional system to genuine inclusion and independence. There will be a new set of risks and challenges, but individualized housing is here, we are on the path already.

John Maltby is the Director of the Community Support Network at Westchester Institute for Human Development (http://www.wihd.org/CSN). John can be reached at jmaltby@wihd.org.

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