Community inDetail

Community inDetail

This section of the Deinstitutionalization Toolkit includes the supportive detail on the subject of Community. The research and detailed information are intended to provide background for the Deinstitutionalization Toolkit:

Community-Based Setting—Characteristic, Types, and Populations

Characteristics

Historically, out-of-home “community-based” settings were defined as small group homes with three to five residents and 24-hour paid staff. Over time, that model has evolved. In 2009, the most recent data available, 321,463 people (Lakin et al., 2010) received residential services in small community-based settings such as these:

  • Shared Living/Home Provider: Individualized shared-living arrangements offered within a contracted provider’s home for one or two people.
  • Supervised Living: Regularly scheduled or intermittent supports provided to a person (or two) who lives in his or her own home.
  • Group Living: Group living arrangements for three to six people, staffed full-time by providers.
  • Staffed Living: Residential living arrangements for one or two people staffed full-time by providers.
  • Small Intermediate Care Facilities for the Developmentally Disabled (ICF/DD): A highly structured residential setting for up to six people that provides intensive medical and therapeutic services.

Types and Trends

Figure 1 displays information from the National Core Indicators (NCI) 2009–2010 survey (the most recent data available). This survey focuses on the level of community participation experienced by community-based service consumers and then compares the scores with the average scores from 16 states; Orange County, California; and the District of Columbia. Figure 1 presents the percentages of the total population surveyed in the different type of residences. Although the percentages may differ between states and from the states that were not part of the survey field, these numbers may reflect an accurate representation of the percentages of total community-based setting model populations.

Figure 1. Type of Residence (N = 11,429)

Bar chart comparing the percentage of total (11,429) survey participants by community-based setting type. The types and percentages are: Specialized Institutional Facility – 20%; Group Home – 26.2%; Apartment Program – 5.2%; Independent Home/Apartment – 11.2%; Parent/ Relative’s Home – 27%; Foster Care/Host Home – 3.5%; Nursing Facility – 0.8%; Other – 4.6%; and Don’t Know – 1.5%.

Source: NCI 2009–2010 survey.

People with Intellectual Disabilities and Developmental Disabilities (ID/DD) Who Leave Institutions—Where They Go: Proponents of community living warn that merely closing an institution does not ensure that residents will be relocated to the community. As table 1 shows, nationwide 80 percent of people discharged from an institution moved to the community in 2008. However, this varies by state. For example, when the Howe Center in Illinois closed in 2009, 38 percent of the residents were transferred to other large state institutions (based on statistics reported in Shannon, 2009).

Table 1. New Place of Residence of People Discharged from Large State Facilities between Fiscal Years 1985 and 2008

New Place of Residence

1985

1998

2008

Community Placements

 

 

 

Group home (15 or fewer residents, including small private ICFs/DD and other group homes)

40.4

50.9

49.4

Semi-independent/Supported living

1.4

9.2

12.8

Home of parents or relative

17.1

10.8

5.7

Foster/host family home

7.1

6.3

3.2

Total Community Placements

66.0

77.2

71.1

Institutional Settings

 

 

 

Group home (16–63 residents)

7.4

3.7

6.2

Nursing facility

4.1

2.6

5.1

State facility

10.1

6.1

4.9

Mental health facility

1.4

1.5

2.6

Correctional facility

0.2

0

1.6

Nonstate facility

3.8

0.7

0.9

Total Institutional Settings

27.0

14.6

21.3

Unknown/Other

6.9

8.1

6.5

Total

100

100

100

Source: Data from Lakin et al. (2009) table 1.

Choice of Setting by Individual with ID/DD: Advocates and self-advocates want their state developmental disabilities service systems designed to provide choices and self-direction, as well as protection from abuse and neglect. Research shows that there is no trade-off of health and wellness or freedom from abuse or safety when community affiliation, choice, and self-determination are increased (Gardner, 2003)

Although the settings may differ in characteristics and size, an essential component of the larger benefit to people with ID/DD in the community is the availability of choice in the type of setting in which they reside. Table 2 presents the proportion of people who chose their community setting from the surveyed state’s participants from the NCI 2009–2010 survey.

Table 2. Proportion of People Who Chose the Place Where They Live (Adjusted Variable), by State

 

N (observed)

Adjusted Proportion

WY

359

83%

KY

425

63%

GA

423

58%

OK

344

51%

ME

391

48%

DC

330

47%

IL

330

45%

NC

864

41%

OH

487

40%

AR

385

40%

NY

1,088

38%

RCOC

544

36%

PA

1,205

35%

MO

390

32%

LA

317

31%

NJ

400

27%

AL

436

16%

TX

n/a

n/a

Total

8,718

43%*

Source: Consumer Outcomes – Phase XII Final Report 2009–2010 Data.

Services and Supports

All states have been expanding services to people with ID/DD through community services programs, mostly funded through the Home and Community-Based Services (HCBS) Waiver program. This Medicaid program offers flexibility for the individualization of services. It is the most significant funding source available to states to provide community services to people who otherwise would be living in a Medicaid-funded long-term care facility.

Today, virtually all people with ID/DD can receive the support they need to maximize independence, be productive, and lead the lives they choose in the community if their community’s services are sufficiently funded and developed. To achieve successful community living, systems must focus on ensuring that each individual is integrated into the community to the maximum extent possible and has access to the supports and services needed to achieve personal goals.

Some of the services and supports required for a person with ID/DD will differ in the community setting from those required in the institution. These services and supports may include assistance with housing, transportation, financial management, and employment. Services and supports for people with ID/DD will also differ based on the level or severity of the disability. In the community, services and supports are made available based on an individual determination of need. This is a more targeted approach to service and support provision than the institutional approach.

Types of Community-Based Services and Supports

In the community, services and supports are provided by a variety of public, nonprofit, and for-profit service providers and are provided in various settings. The types of services and supports include the following:

  • At Home Supports: These supports range from one-to-one assistance from a support worker with identified aspects of daily living (such as budgeting, shopping, or paying bills) to full 24-hour support (including assistance with household tasks such as cooking or cleaning, and personal care such as showering, dressing, and the administration of medication). The need for full 24-hour support is usually associated with difficulties recognizing safety issues (such as responding to a fire or using a telephone) or people with potentially dangerous medical conditions (such as asthma or diabetes) who are unable to manage their conditions without assistance.
  • Day Services: Nonprofit and for-profit private agencies provide an array of day services such as teaching life skills, social and recreational activities, community outings, communication and mobility training, physical and occupational therapies, sheltered workshops, and vocational services leading to integrated employment or volunteer opportunities in the community.
  • Other Services and Supports: In addition to the services designed specifically for people with ID/DD, community residents use mainstream services for medical, dental, and other professional care. Their medical services are provided by doctors, nurses, personal care assistants, provider agency staff persons and trained family members. At times, specialized medical services must be created or packaged in order to meet specific needs: Medical equipment might be brought into a home, or round-the-clock nursing assistance might be provided to enable the person to live as normally as possible.

Because these services need to be individualized and can be available through many different providers, many states have developed “single points of entry” and case management or service coordination programs to help people navigate the system of care.

Individual Service and Supports

A core element of community living is ensuring that all people have the services and supports they need to live the fullest and most personally satisfying life possible in the community. Individualized planning is an absolute necessity, and planning prior to leaving the institution is mandatory. It is important that this process be as comprehensive and inclusive as possible, involving the individual, existing and potential care givers, professional care team members, and others.

It is also critical to initiate and maintain ongoing assessments of both the individual’s needs for services and supports and their availability within the community. The process is needed both for people living in the community and those entering the community from institutional settings.

Person-Centered Planning (PCP)

PCP is one approach to individualized planning. It is a process by which the person with the disability and people important to that person develop a vision of the person’s life going forward and identify the types of services and supports required to achieve that vision. PCP should be discussed with the team that will be working with the person in the community while the person is still in the institution and used to develop a transition plan, spelling out how the person will move, who will be responsible at the time of transition for continuity of support, and how problems will be solved (Thompson et al., 2009).

Research has found that PCP yields better outcomes for adults with intellectual disabilities than do traditional methods of service planning. It is a time-consuming process, and states have implemented PCP in varying ways. However, states are increasingly adhering to the following PCP process:

Five Steps in an Effective PCP Process

Step 1. Identify Desired Life Experiences and Goals: The primary purpose of a PCP is to find out what is important to the person, and it is essential that discussions are not constrained by available services or by perceived barriers such as fiscal restrictions or limitations in a person’s skills (O’Brien and O’Brien, 2002).

Step 2. Determine the Pattern and Intensity of Support Needs: Gather information on the nature of supports the person requires to participate in an array of activities, especially those identified in the previous step. Some states use a standardized support needs assessment instrument (such as the Supports Intensity Scale) or the Inventory for Client and Agency Planning to evaluate an individual’s support needs across different domains and identify exceptional medical and behavioral support needs. Other approaches include direct observation of the person in a variety of life activities and structured interviews with the person and his or her family members.

Step 3. Develop the Individualized Plan: Based on the findings in the first two steps, the team develops a plan that specifies (a) the settings for and activities in which a person is likely to engage during a typical week, and (b) the types and intensity of support that will be provided and by whom.

Step 4. Monitor Progress: Monitor the extent to which the person’s individual plan was implemented.

Step 5. Evaluate: Evaluate the extent to which desired life experiences, goals, and personal outcomes are being realized.

Source: Based on Thompson et al. (2009).

Individual Budgeting

At the center of a system promoting self-direction is a personal budget allocation the individual may apply, within the bounds of an approved service plan, to buy needed supports (Agosta et al., 2009). The state determines the budget amount for each individual by assessing the individual’s support needs, coupled with reasonable reimbursement rates for providers.

Some states have experimented with consumer-directed funding (also known as cash and counseling), whereby the consumer or a family member has more control over the expenditures. The Cash and Counseling original multiyear demonstration projects were sponsored in 15 states by The Robert Wood Johnson Foundation and the United States Department of Health and Human Services. The Cash and Counseling state demonstration projects proved to be “an excellent option for states seeking to improve consumer and caregiver well-being” (Brown et al., 2007).

Community Resource and Planning Consideration

In the planning and budgeting process, it is very important to ask the right questions. In 1999, the University of Minnesota developed a guide identifying some of the key areas and questions to ask when making choices about living arrangements and community supports and services. Here is a brief overview of these issues. For more information, check out this link:

Categories

Types of Questions to Ask

Finding the Community Service Provider That Best Fits the Individual’s Needs

How can I compare service providers? What should I look for?

Qualifications, Licensure, and Other Indicators of Quality Service Provision

Is this living arrangement licensed by the state? Is it routinely inspected? Do staff have to receive specific training to work here? If so, what types of training are required?

Medical and Dental Health

How will mental and dental health services be provided? Who will select the provider?

Self-Determination and Choice

To what extent is the individual engaged in decision making and allowed to make choices about daily living activities?

Social Relationships

To what extent is the individual free to establish and maintain social relationships with individuals of his or her own choosing, who may or may not live in the same house or facility?

Home Environment

Does this environment “feel” like a home? Does the individual have a key to the front door? Can the individual have friends in for visits?

Home Visit Checklist

What should you look for when visiting a home or facility that you are considering?

Supports

What supports are available to individuals living in this situation? Do they foster independence?

Family Involvement

Is family involvement encouraged and supported? Are there limits to a family’s access to family member?

Transportation

What types of transportation are available? Are there separate costs involved? How is it arranged?

Recreation and Community Activities

Are individuals encouraged to participate in recreational and community activities? How is this involvement fostered and supported?

Vulnerability and Safety

Is there an individual assessment of risks related to the individual in this particular environment? What measures are in place to ensure the safety of the residents?

National Council on Disability • 1331 F Street, NW, Suite 850 • Washington, DC 20004