Residential Options for Adults with Intellectual DisabilitiesStephanie Winter and Jennifer KowittEPSY 5121 - Fall 2011

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Introduction
Residential options for adults with Intellectual Disabilities (ID) have broadened in recent years, particularly as individuals with disabilities are taking control of their lives and making their own decisions (Simons, 2004). The number of residential settings for people with ID has and continues to grow rapidly (Lakin, Larson, Salmi, and Webster, 2010). On June 30, 2009 there were an estimated 173,042 residential settings in which people with ID/DD received residential services from state operated or state licensed residential service providers. In contrast, in 1977 there were only 11,008 state licensed or state operated residential service settings and in 1997 there were 96,530 (Lakin et al., 2010, p. iv).

The purpose of this presentation is to introduce the wide range of supported housing options available to adults with intellectual disabilities. Own home/independent living, supportive living, family supports, and group homes are residential options for adults with ID that have varied positives and negatives and have been examined through evidence-based research. These options exist in various forms throughout Connecticut, though with varying degrees of availability. As special educators who are charged with assisting our students with transitioning from K-12 into adult life, it is imperative that we are aware of the strengths and challenges of the various residential options so that we may best guide our students and their families.

60% to 75% of adults with ID and related disabilities in the United States live with family caregivers, 14% to 25% live on their own or with a spouse, and 8% to 13% live in supervised out-of-home residential facilities (Huang & Blum, 2010, p. 67). Studies of youth with ID who have graduated from special education programs suggest that 25% to 33% are able to live independently in the community. Two studies that followed individuals with intellectual disabilities from birth into their 30 to 40s and found over half living independently (Huang & Blum, 2010, p. 66). Of adults with intellectual disabilities living in non-family supervised settings, approximately 75% live in small group homes or supported living arrangements (Huang & Blum, 2010).

Organization of the Wiki

| Transition and the Law | Funding | Residential Options | Own Home/Independent Living | Group Home | Family Supports | Connecticut Resources | Supported Living Case Study: Brian House, Chester, CT | Conclusion | References


We begin with a discussion of the history of residential options for adults with ID, focusing on deinstitutionalization. We then discuss the legal background of transition and two important policies that affect the financial possibility of these options: Sections 8 and 811 and Money Follows the Person. Own home/independent living, group home, family supports, and supportive living are discussed in greater detail, with corresponding examples in Connecticut. Resources in the state are presented.

Background

The second half of the twentieth century saw a turn against the institutionalization of individuals with disabilities and subsequent support of community-living for this population. Since 1967, the number of individuals living in large state institutions has decreased by nearly 80% (Huang & Blum, 2010). In their report on residential housing trends for people with intellectual and developmental disabilities, Lakin, Larson, Salmi, and Webster (2010), reported that "The nation moved from large facility-centered to community residential services between 1977 and 2009" (p. vi).

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U.S. Trends in Average Daily Residents with ID/DD in Large State ID/DD and Psychiatric Facilities per 100,00 of the General Population, 1950 - 2009. Adapted from "Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009," by K. C. Lakin, S. Larson, P. Salmi, and A Webster, 2010, Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration, p. 7.



In 1971, Congress authorized Medicaid to pay for community-based services for individuals with ID through Intermediate Care Facilities. In 1981, Congress authorized the Medicaid Home and Community-Based Waiver that allowed the funding of supports that enabled individuals with ID to live at home or in other community settings (Huang & Blum, 2010). In June 2009, Mississippi was the only state that reported the majority of residents with ID/DD (60.6%) living in facilities with 16 or more people. In contrast, 13.6% of all residential service recipients nationally lived in settings of 16 or more (Lakin et al., 2010, p. v).

Connecticut Institution Residents with ID/DD by Year

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From "Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009," by K. C. Lakin, S. Larson, P. Salmi, and A Webster, 2010, Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration, p. 107.



Persons with ID/DD in Connecticut by Home Size in Years 1982, 1994, and 2009

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From "Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009," by K. C. Lakin, S. Larson, P. Salmi, and A Webster, 2010, Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration, p. 107.


Studies consistently find that any community-based living option has associated benefits when compared with living in large institutions. Individuals living in the community have better adaptive skills, fewer problem behaviors, increased community participation, more friendships with non-disabled peers, and greater personal freedom (Huang & Blum, 2010). However, choosing among the different options presents a greater challenge as each is associated with a range of advantages and disadvantages that will differ based on the individual. For example, adults with milder disabilities tend to demonstrate more self-determination, community participation, and independence when provided with lower levels of support, whereas those with more severe disabilities benefit from greater support. Confusing matters, some studies suggest that individuals with milder disabilities living with fewer supports may use fewer preventive health services and have greater financial management challenges (Huang & Blum, 2010). The pros and cons of specific residential options will be discussed in greater detail later in the wiki.



Transition and the Law


According to the Individuals with Disabilities Act (IDEA), secondary programs must develop a coordinated set of transition services. Living arrangements and skills are emphasized within this mandate, as highlighted below:

§300.43 Transition services (Individuals with Disabilities Education Act, 2008).
(a) Transition services means a coordinated set of activities for a child with a disability that--
(1) Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;
(2) Is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and includes--
(i) Instruction;
(ii) Related services;
(iii) Community experiences;
(iv) The development of employment and other post-school adult living objectives; and
(v) If appropriate, acquisition of daily living skills and provision of a functional vocational evaluation.

Nonetheless, adult independent living is one area that is often underemphasized in transition planning (Riesen, 2010). The transitioning individual, parents, teachers, and other stakeholders should reflect on and explore which residential options are desirable and realistic from a skills and a financial perspective.



Funding



Kira, a self-advocate, speaks about her independence and the critical role of government financial support in allowing her to live the life she chooses. Retrieved 2 December 2011 from YouTube: http://youtu.be/vglkPCV7h5w.

Section 8 and 811

When any person begins to look for housing, their first question must be, "What can I afford?" Americans have long dealt with issues of affordable housing. So long, in fact, that the option for federal housing subsidies has been available since the end of the Great Depression. Section 8 of the US Housing Act of 1937 was established to provide opportunities for low-income families and individuals to live in safe, affordable housing. In Connecticut, those in need of housing assistance apply to the Department of Social Services and if they are accepted, go onto a long waiting list. They may wait many years to receive housing assistance while on this list. Once their service is active, individuals choose their own housing and their rent is calculated based on their gross income. Usually, residents pay between 30 and 40 percent of their income for rent and utilities and the government pays the remainder to the landlord. For residents whose income is nothing, they pay nothing (DSS, 2011).

Section 811 is a reform bill that was passed to modify Section 8 of the US Housing Act of 1937. Its formal name is “Section 8 Mainstream Housing Opportunities Program for Persons With Disabilities” and its aim is to provide funding to non-profit organizations that will develop affordable, supportive housing for individuals 18 years of age or older with very low incomes and serious, long-term disabilities. This includes physical and developmental disabilities, as well as serious mental illness. In addition to funding the advances, the U.S. Department of Housing and Development (HUD) also funds the difference between what the renter under Section 811 can pay (usually 30%, as with Section 8) and the total rental cost. By law, community-based services and supports must be offered and available to tenants living in Section 811-funded housing. This access to supports is extremely important because individuals who are eligible for but not served by Section 811 live in unnecessarily restrictive settings. They may be forced to live in nursing homes, public institutions, or with aging parents (NLIHC, 2009).


Money Follows the Person (MFP)

In 2001, the Connecticut Department of Social Services was awarded $24.2 million to transition at least 700 individuals from institutional or nursing home care into community settings by 2012. This Fact Sheet describes Connecticut's specific plans to meet the goals of the grant. Nationally, thirty states and the District of Columbia were awarded grants like this one, called Money Follows the Person (MFP). These individuals include those with mental illness, physical disabilities, intellectual disabilities, and the elderly. Six support staff and twenty-five transition and housing coordinators are in charge of facilitating these new transitions. One important component of MFP is an outreach program designed to make these transition options known to individuals with special needs currently residing in institutions or nursing homes. If eligible, these individuals can receive financial coverage for assisstive technology, full home care, and appropriate housing. They can also select the option, if they choose, to “self-direct” their care. The limitations on this vary depending on the disability, but "self-care" may allow the participant to develop and manage their own budget, hire their own staff (including hiring family members as paid staff), and generally coordinate their care plan. Anyone who participates in the MFP program but is re-institutionalized for more than 30 days will lose their MFP eligibility. Participant preference in location and type is taken into account (Connecticut Department of Social Services, 2008).

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Types of housing options available through MFP are:
  • Home owned or leased by individual or individual’s family member
    • State definitions of this type include: Home leased by individual or family, Home owned by individual, Home owned by family, Co-op owned by individual
  • Apartment with an individual lease, lockable access and egress, and which includes living, sleeping, bathing and cooking areas over which the individual’s family has domain and control
    • State definitions: Apartment building, Assisted Living, Public Housing units
  • Residence, in a community- based residential setting, in which no more than 4 unrelated individuals reside
    • State definition: Group home
(Connecticut Department of Social Services, 2008).



Residential Options


Once an individual with ID knows how much financial support they will receive, their family and they can begin exploring residential options. Institutionalization is only considered now in extremely rare cases, as many more options affording different levels of independence are available. Tools like the Transition Skills Checklist below assist key participants in transition decisions in determining which living environment may be best for the individual.

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Transition Checklists and other tools can help the individual, family members, educators, and other key players determine the skills possessed by the individual and subsequently decide appropriate residential options for adulthood. From "Thinking about tomorrow: the transition to adult life," by J. Simons, 2004, Disability Solutions, 6(1).





































Following are definitions of the most common housing options currently offered in Connecticut.

Own Home/Independent Living
The home is owned or rented by one or more persons with ID as their personal home. S/he receives personal assistance, instruction, supervision; other support is provided as needed in that setting (Lakin et al., 2000).

Group Home
A group home is distinguished from supportive living by the nature of the staff presence in the home and the funding. A group home offers twenty-four hour care. In some cases, a staff member may be required to stay awake during a "third shift," or in some cases may simply sleep in the home with the residents. Depending on resident need, a group home may have a health care provider on staff. Group homes may serve more people than would a supportive living arrangement. These are also sometimes called vendor owned homes, community residences, or congregate housing (Simons, 2004). In addition, state funding comes directly to the agency running the home rather than to the person. The agency then manages the resident's money.

Family Supports
The home itself is owned or rented by a family member who lives in the home and provides care and support for a related person with a disability.

Supportive Living
"Supportive" is a broad term that could indicates varying levels of support, ranging from staff visits in both the morning and evening to visits throughout the majority of the day, or just a phone call each day with visits every other day. Generally, "supportive living" indicates that residents receive a level of support that suits them, but have a period of time each day when they are unsupervised. There are also rarely more than three residents per supportive living arrangement. In supportive living (also called Individual Home Supports), funding goes directly to the resident, who uses the money to pay their rent to the agency, which acts as their landlord.


Number of People with ID/DD Nationally Receiving Each of Four Types of Support as of June 30, 2009

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"Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009," by K. C. Lakin, S. Larson, P. Salmi, and A Webster, 2010, Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration, p. 45.





Own Home/Independent Living

The home is owned or rented by one or more persons with ID as their personal home. S/he receives personal assistance, instruction, supervision, and other support is provided as needed in that setting (Lakin et al., 2000).

Supported living focuses on placing people in their own homes and building supports around each individual, allowing individuals with disabilities more control over their own day-to-day activities; care is distinct from living environment (Riesen, 2010). In their study of residential trends of people with ID, Lakin et al. (2010), found that 27.8% of Americans with ID/DD (about 122,088 people) who receive residential services live in their “own homes” that they own or lease; this number represented a 187% increase from 1994 (p.v). Because of the independent living movement, as well as supported living and personal assistance services, individuals with disabilities are beginning to realize that homeownership itself has become a reality (Riesen, 2010). The Home of Your Own Program has helped to make home ownership for individuals with disabilities a possibility.


Homes Owned or Leased by Persons with ID/DD and the Number of People Living in Them on June 30, 2009

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From "Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009," by K. C. Lakin, S. Larson, P. Salmi, and A Webster, 2010, Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.




Living independently with supports is considered to have many advantages. By way of example, people living independently have been found to have higher household participation than those living with family members (Felce, Perry, & Kerr, 2011). Many websites, advocates, and services tout the advantages of living independently with supports, often viewing this arrangement as superior to others. For example, in her article offering advice about transition, Simons (2004) writes, "The importance of individuals owning or controlling (through lease agreements) their living environments cannot be overstated since so many decisions (roommates, furnishings, house routines) should be in the hands of the individual" (p. 10).


Chad of Danbury, CT talks about what he has learned and how he feels about living independently. Retrieved 28 November 2011 from YouTube:
http://www.youtube.com/watch?v=-Bdnegxlt4E.

However, in their study, Shaw, Cartwright, and Craig (2011), found that some individuals with disabilities felt this option was less than ideal. Some of the subjects interviewed for the study were concerned about feeling isolated. Additionally, some subjects experienced hostility from members of the community or had difficulty having their needs met. These divergent attitudes about own home/independent living highlight the importance of examining each residential decision on a case-by-case basis.

Independent living centers (ILCs) are useful resources for individuals with disabilities living independently. ILCs help adults with disabilities achieve and maintain independent lives in the community. They are nonresidential, community-based, locally-operated agencies that are part of a national network ("Independent Living Connections", 2009). Two national-level organizations are available to help locate local ILCs:

Independent Living Research Utilization Project

National Council on Independent Living





Group Home

A group home is distinguished from supportive living by the nature of the staff presence in the home. A group home offers twenty-four hour care. In some cases, a staff member may be required to stay awake during a "third shift," or in some cases may simply sleep in the home with the residents. Depending on resident need, a group home may have a health care provider on staff. Group homes may serve more people than would a supportive living arrangement.

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Photograph by Stephanie Winter, 29 November 2011.



In 2009, about 86.4% of people with ID/DD receiving residential services lived in settings with 15 or fewer residents, 73.1% with 6 or fewer residents, and 46.9% with 3 or fewer residents (Lakin et al., 2010, p. v). Many benefits are associated with living with peers, including companionship, friendship, social interaction and sense of community (Shaw, Cartwright, & Craig, 2011). People living in staffed housing have been found to have higher participation in household activities and to more frequently participate in community activities than people living independently and in family homes (Felce, Perry, & Kerr, 2011). Living with a group of peers can provide greater choice regarding friendships and activities, as well as a sense of belonging (Shaw, Cartwright, & Craig, 2011).

However, there are drawbacks to this kind of residential option. While group homes may provide opportunities for growth, a provider, management agent, or state agency is still making important decisions about the environment and the support staff, thereby limiting the input or control of the individual resident (Simons, 2004). This is in contrast to supported-independent living.



Family Supports

The home itself is owned or rented by a family member who lives in the home and provides care and support for a related person with a disability.


In 2009, states reported that the majority of people (599,152 or 57.7%) receiving ID/DD residential services lived with one or more family members (Lakin et al., 2010, p. vi). Lakin et al. (2010) reported that between 1999 and 2009, the number of service recipients living with family members increased from 355,152 to 599,152 (p. vi). In June 2009, 7,758, or 52.6%, of people with ID in CT received services while living at home with a family member (Lakin et al., 2010, p. 46). Nationally, states reported supporting 599,152 people with ID/DD living in the home of a family member compared to 439,515 people receiving residential supports in a congregate care, host family/foster care, or own home setting. Nationally, an estimated 57.5% of all people with ID/DD receiving support lived in the home of a family member (Lakin et al., 2010, p. 44).

Studies have examined the advantages and disadvantages to this type of living arrangement. For example, individuals living with family members may receive significant support from parents and siblings (Huang & Blum, 2010). Compared with adult in residential accommodations, those living with their families were more likely to report being happy (Blacher, Neece, & Paczkowski, 2005). However, they are also more likely to report being lonely (Blacher, Neece, & Paczkowski, 2005) and are less likely to have friendships with peers than those who live in group homes or in supported independent arrangements (Huang & Blum, 2010). Many parents may inadvertently reinforce children for inappropriate behavior, including attention-seeking and reduction of demand (Blacher, Neece, & Paczkowski, 2005). Individuals living with family members are also more likely to be obese (Huang & Blum,2010).

Adults with ID who live at home and their families can receive support services through the state or independently. The Kennedy Center is a private, community-based rehabilitation center in Connecticut that provides a range of supports. In addition to day and residential supports, The Kennedy Center also offers family supports: a unique option for individuals currently living with their family. Families with younger parents or caregivers can choose to have supports offered in their home by a Kennedy Center staff member, fit to the level of need of the individual with special needs. Alternatively, for families where the parents or caregivers are over the age of sixty, they can enroll in a program called "Caring for the Caregiver." The Kennedy Center describes their program as being "truly innovative to the caregiving concept. Unlike the traditional caregiver programs, where the caregiver is identified as the parent who looks after a child with disabilities, the caregiver is identified as the adult with intellectual disabilities, who provides assistance for an elder family member. The Caring for the Caregiver program does home visits and assessments to offer a sensible and functional support system."

Respite is an important service available to support families providing care to adult children with disabilities. Respite is planned or emergency care for a person with disabilities, which provides temporary relief to the family caregivers. The National Respite Network and Resource Centerprovides information about respite and local providers. Its mission is, "to assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums."

ARCH Minute from CHTOP, Inc. on Vimeo.




Connecticut Resources



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http://www.abilitybeyonddisability.org/what-we-do/residential-supports/individual-home-supports/
ABD provides Individual Home Supports for individuals with special needs who want to live as independently as possible within a community setting. This can mean either the individual’s own home or their family’s home. Supports are individualized and are available for as long as they are needed.


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http://benhaven.org/res.html
Benhaven operates five residential facilities for adults. The organization seeks to develop individuals’ daily living skills as they affect home life as well as social and community interactions. Each individual has his or her own individualized support plan addressing long term goals and objectives. Its website describes its program as involving “a mixture of structured learning in a setting that strives to be comfortable, accessible, and homelike.” There are limited spots available, however, and there is very little turnover in these homes. Therefore, there is no waiting list and they do not accept referrals for adults.


Community Residence
http://www.criinc.org/#!__adult-services
Community Residences, Inc. (CRI) is a non-profit that serves individuals with special needs in Connecticut. For adults, their services include residential group homes, residential supports in apartments, day supports in group and home settings, group supported employment, and individual vocational supports. One program offered to adults is called the CRI Community Living Arrangement (CLA). CLA provides twenty-four hour supervision to individuals with special needs in a group home setting. In order to qualify for this placement, the individual must have “needs for significant support in all areas of development.” Residents here have day programs and therapies, as well as programs to increase social and daily living skills that lead to independence. Alternatively, for adults who have “significant intellectual limitations and have other significant handicapping conditions,” there is the option to reside in one of the Intermediate Care Facility/Mental Retardation (ICF/DDS) group homes operated by CRI. This program is designed to provide twenty-four hour nursing care in the least restrictive setting possible. These homes offer both physical and occupational therapies to their residents and focus strongly on increasing daily living skills. Finally, CRI also offers services to adults with mild to moderate disabilities who already live independently. The adults supported by the CRI Supported Living Arrangement (SLA) Program may need assistance with money management, meal preparation, home care, health maintenance, or may have other needs that can be met with the assistance of a drop-in staff.


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http://www.cacil.net/Independent_Living_Philosophy.html
"The entire focus of the Independent Living Movement is the realization that freedom to make choices and the ability to live in the community is a basic civil right that should be extended to all people, regardless of disability. With this framework, Independent Living Center staff work with and for the consumer to promote his or her independence in the community."


Connecticut Group Homes
http://www.cga.ct.gov/2010/rpt/2010-R-0221.htm
"A town-by-town list of all state agencies' group homes located in single family residences, the type of clients they serve, and their capacity and current census." Group homes operate through many difference agencies. In Connecticut, the majority are run by the Department of Developmental Services (DDS). Others are run by the Department of Mental Health and Addiction Services (DMHAS), Department of Children and Families (DCF), or the Court Support Services Devision (CSSD).


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http://www.csh.org/index.cfm?fuseaction=page.viewPage&pageID=4443&nodeID=81
"The Supportive Housing Employment and Training Services Directory was developed to meet the growing need for a central information repository on employment and training services available for residents of supportive housing and individuals exiting homelessness. This resource will assist providers who are working to end long-term homelessness by offering information resources in employment and training services."


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http://www.socialserve.com/tenant/index.html?state_id=4110&ch=CT
"A free resource for finding and listing housing anywhere in Connecticut." Includes links to landlords accepting Section 8 vouchers.


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http://www.thekennedycenterinc.org/
"The Kennedy Center, a private, community-based rehabilitation organization, actively responds to needs of persons with disabilities by offering innovative, comprehensive community services to persons with disabilities and special needs,from birth to senior years."


Supported Living Case Study: Brian House, Chester, CT

by Stephanie Winter

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Brian House home in Chester, CT. Photograph by Stephanie Winter, November 2011


To get a first-hand experience of what it might be like to search for housing, I visited Brian House: a private agency in Chester, Connecticut. Brian House places adults with special needs in a variety of residential settings, ranging from one-person apartments with very minimal staff presence to group homes and Continuous Residential Support (CRS) homes where a house manager or residential supervisor may live on the premises. Their model generates a true family feel, as so much of the staff lives on-site. Some staff members have lived in an agency home for over twenty years.

First, I spoke with Michelle Peckham, Program Coordinator for Brian House. She is responsible for managing the agency and residents’ funding and for making placements for new residents. My first question to her was, “How are your residents funded?” The word “complicated” followed shortly after. There are two main channels of funding available to individuals with special needs in Connecticut: the Department of Developmental Services (DDS) or the individual’s own family.This should simplify the issue, but DDS funding is extremely variable. In order to establish what amount of funding an applicant will receive, DDS tests them for their Level of Need (LON), both for residential and day programs. A lower LON score indicates less intensive supports, thus lower cost and less funding from DSS.

In the case of group home placements, the individual may also receive benefits from DSS, that pay the room and board costs, along with the individual's Social Security benefits. It is also possible that an individual will receive funding for a day program without being eligible for residential services. Historically, funding for day programs had been easier to obtain. Within the category of “day program,” however, funding also varies. Different funding follows different employment levels.


When an individual with special needs applies to DDS for housing, DDS gives them a priority rating: E- Emergency, Priority 1- requesting services within one year, Priority 2- one to three years. Currently most referrals are individuals who are considered an emergency. This could include circumstances like imminent danger to the individual in their current living situation, the threat of homelessness, or parents who have aged and are no longer able to adequately care for their child. Individuals who are a Priority 1 can wait much longer than one year and are not immediately referred for placement even if an agency has an opening that may be appropriate. Additionally, there is very little turnover among residents. Thus, the waiting list turns into something of a housing wish list. It is possible that these individuals will remain on the DDS waiting list indefinitely, until their minimal need becomes moderate, and finally becomes an emergency too great for the system to ignore.

Very quickly, it became clear to me that without a strong advocate, it would be almost impossible for anyone with special needs to navigate this system and emerge with all of the services and funding that they are entitled to. Knowing this, I was eager to see how the houses worked and to meet some of the residents who hold these coveted placements. Michael Mather, Supported Living Coordinator for Brian House, took me on a tour of three of their residences. The first was a home categorized as Supported Living. Here, four men live in a beautifully restored antique home, sharing nearly all of the chores and responsibilities that come with running a house. They all do their own cleaning, for example, but some of the house members receive help with tasks like filling out their monthly bill payments.

Each man has his own bedroom, decorated to reflect his personality. One resident has his bedroom decorated to be an exact replica of the bedroom he had in his previous house. This was to help ease his transition into the new home so that in a sense, he was still waking up in a familiar place. Another resident is a self-proclaimed “huge gamer,” and so had posters of video game characters on his walls. Yet another resident showed me his posters of favorite celebrities and sports teams, as well as some striking black and white framed photos of himself, taken by one of the staff members. While he did not have gaming posters on the wall like his housemate, he admitted to being a “huge gamer” too.

In addition to the four bedrooms, the house has a staff office upstairs that is locked when unoccupied. There are also several bathrooms, a dining room, a living room with a public office area where residents can use a computer and printer if needed, and a spacious kitchen where the residents cook their own meals. Every room was exceptionally tidy, and no cleaning services come in to help. Being a part of the Supported Living model, this house does not have attached staff housing. Generally, one staff member comes in the morning to help prepare the residents for their day, and two arrive once the residents’ workdays are over (around 3:30 pm) and stay until 9:00 pm. On weekends, staff members come a bit later in the morning, but stay through the day and evening, approximately 9:00am to 9:00pm.

This house shares property with two other Supported Living arrangements, but both are single-resident apartments. A few minutes away, three young women live in a new support model that Brian House is implementing called Continuous Residential Support (CRS). This model is something of a hybrid between a typical group home (with 24-hour care administered in shifts) and Supported Living. This type of home is inspected by DDS, but does not require licensing like group homes. With CRS, residents do have 24-hour care, but their house manager lives on the premises in an attached home. In this case, house manager Jennifer Mrowka permanently lives just a few feet from the young women she supports, as the garage for the house was converted into an apartment. A clear testament to the agency, Mrowka said that she started working with Brian House at the age of eighteen and just never stopped. Fifteen years later, she is still a happy resident and employee and has a wonderful relationship with all Brian House residents. The same is true of Michael Mather and his wife. They have been residents and employees of Brian House for over twenty years and as with Mrowka, the familiarity and comfort shows.

Though my view of Brian House was limited, I can still say with certainty that an agency like this one offers exactly what any parent of a child with special needs has always hoped for. Every house I visited felt like another facet of the same extended family. The support for each resident is truly individualized and affords them the most appropriate level of independence for their ability. Staff members like Mather, Mrowka and Peckham are the backbone of this agency, as their care and respect for the people they support is almost palpable. They are at once completely professional and completely present and relaxed with their clients. It is clear that for them, this is more than a job. It is a lifestyle and a choice, and every single resident of Brian House benefits from their dedication. As a sister of a young man with special needs myself, Brian House gives me hope. The turnover rate may be slow, and his priority number may remain a two for many years, but Brian House is there. And maybe others like it are there, too. It’s just a matter of finding them.



Conclusion


Overall, a consideration of residential options for an individual with ID ultimately rests on three words: choice, availability, community. There are more choices than ever before, but how many people can be serviced by the available options? And even if an appropriate option is available, are there enough funds to make it possible? Does the individual know how to access these funds? Securing housing can be an incredibly daunting task, and as a result, many states report that over half of their population with ID lives with a family member (Lakin et al., 2010, p. vi). Those living with family members may receive more direct support than those under institutional care, and may report being happy, but they also report being lonely, as they are probably the only person in their home to have a disability (Blacher, Neece, & Paczkowski, 2005).

From the videos, statistics, and interview presented here, living situations that promote independence lead to the greatest sense of accomplishment in the resident. Supported living and Continuous Residential Supports allow individuals with special needs to take ownership of the responsibilities that they can reasonably manage while providing support in areas that are out of the individual's skill set. Group home offer similar opportunities, but the residents here are generally more reliant on staff support.

The main difference between family supports and own home/independent living and group home or supported living is community. One of the most important residential considerations is not only where you will live, but with whom. Who will you share your home with? Who will your neighbors be? Having a community within the home allows for an immediate network of peers, and simply living separate from one's family instills a greater sense of independence and self-direction. Knowing now the resources available in Connecticut, it appears that we as a state are on a great track, but need more. We need more funding to go to individuals who will go to more agencies, who can then afford to buy more residences and hire more staff. Effective models exist, but low turn-over rates prevent a tremendous number of individuals in need from accessing them. We need more availability and a greater sense of urgency. Every individual with special needs must be considered a priority, but right now, the infrastructure does not exist. Our special needs community deserves a better outlook than this: hopeful prospects on an indefinite timeline. They deserve more.


References


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Peckham, Michelle. (2011, November 29). Personal interview.

Riesen, T. (2010). Postschool residential alternatives. In John McDonnell & Michael L. Hardman (Eds.), Successful Transition Programs: Pathways for Students with Intellectual and Developmental Disabilities (pp. 283 - 295). Los Angeles, CA: Sage.

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