When not living with their families, children with developmental disabilities typically live in community care facilities (e.g., small family care homes), or in foster homes (1 or 2 children), or in health service facilities if considerable specialized behavioral or health care support is needed. (Note: AB 2268/Bates, 760/Bates), and 636/Bates have increased community living options for children with special health care needs. Many such children can now be served in small family care and foster homes.) Adults in the same category (i.e., developmentally disabled; not living with parents) tend to live in community care facilities, health care facilities, or live in their own homes or apartments, often with some support. Some adults (and a few children) live in state developmental centers, or in private facilities of one kind or another (e.g., skilled nursing facilities; large intermediate-care facilities). A few live in college dormitories, fraternity or sorority houses, or in other atypical settings. Foster homes for adults (1 or 2 adults living in a family's home), operating under the auspices of Family Home Agencies, are a new development in California. (Email John Shea for a one-page summary of the basic information about these arrangements.)
Size and service arrangements vary. The trend in residential services for children and adults is away from large towards smaller, more personalized service settings (e.g., supported living; small care homes; foster homes). In terms of how support services are arranged, many patterns are possible. The principal ones are: (1) having at least one live-in person responsible for much of the support; (2) having no live-in person, but rather scheduled support or only drop-in support. Some adults with developmental disabilities prefer to live in families; other adults prefer to live in settings where support is available on a scheduled basis, that is, where no primary care-giver lives in; yet others prefer to live in their own places (owned or leased) with the kind of support they (or their personal advocates) want and can afford. (Note: One regional center recently surveyed adult clients and their families, and learned that adult clients were twice as likely as their parents to want a supported living arrangement compared with a licensed home.) In the case of children living with an alternative family, having a primary care-giver (e.g., foster parents, or a live-in person or couple in an agency-operated home) is recommended.
Generally, an effort is made to match the needs and desires of the individual (and, as appropriate, parents and guardians) with the services offered by a home or program. Health Service homes, for example, focus on individuals who have significant health or medical needs Others called Community Care homes, typically provide non-medical residential services. In addition, you will find different levels of staff support available depending on a designated level of service. (For example, homes which are designated as Level 4, have more resources than Level 2 or 3 homes, and therefore provide more services at better than a 1:6 staff-client ratio. Note: In serving six people, Community Care homes must provide at least one direct-care staff person. Level 2 homes are not required to provide any double- or triple staff support for six. A Level 3 home would be expected to provide 42 additional hours of staff support each week for six residents. A Level 4E home, 132 additional hours per week. A Level 4H home, 210 additional hours per week. Homes serving fewer than six individuals have lower minimum staff support requirements. Some regional centers have used AB 637 (Bates) to suspend, with DDS approval, these and other regulations in order to support innovative, cost-effective alternatives to these staff support models.)
Monthly Rates for Community Care
NOTES: (1) Owner-operated means the owner-operator lives in the home; staff-operated means that the licensee lives elsewhere. At Level 4, no such distinction is made. (2) At each higher level, certain requirements (especially hours of double or triple staff support; consultant hours; documentation requirements; in-service training; etc.) increase. (3) Each person receives another $92 of SSI for personal and incidental needs.
Community care homes (called facilities), or CCFs (e.g., small family care homes, group homes for children, adult residential facilities, residential care facility for the elderly). Program Designs with service level designations are negotiated with the regional center where the home is located. Rates (per person per month) are on the opposite page.
Health service homes known as ICF/MR (Small) facilities. Services at these community homes are funded through Medi-Cal, at rates established by the California Department of Health Services under federal/state agreements. Rates (per person per month) are approximately as shown below.
NOTES: (1) Rates vary by whether or not the person was at the facility on any given day. In-home per diems are $121.26 and $148.67 for DD-Hs and DD-Ns, respectively. Away-from-home per diems are $117.01 and $144.42, respectively. The average month has 30.4 days. (2) If the person's only income would be SSI, there is no share of cost. (3) Each resident receives $35 to $42 for personal and incidental needs. (4) Since the staffing and other requirements to serve 4 or 5 people are the same as for 6, it is extraordinarily rare for such a home to serve 4 or 5 rather than 6.
Foster family homes. (This information was provided by two FFAs.) Other FFAs may do things somewhat differently, and may have somewhat different rate practices.)Depending on the foster family agency (FFA), the foster family receives anywhere from about $850 to $1,200 per child per month from the FFA. SSI goes to the FFA. The agency charges rates somewhere in the Level 4A to 4H range &emdash; that is, from about $2,000 to $3,300 per child per month. The regional center pays the supplement. The difference between the over-all rate and what the foster family receives covers recruitment, the services of an agency social worker, respite and inclusion facilitation services (10 to 50 hours per month), specialist consultation (e.g., R.N., behavioral psychologist, etc.), training, special events (e.g., multi-family picnics, etc.), and administration. A note on taxation of income &emdash; Homes that employ people from outside the family are expected, like any other employer, to make payroll tax payments. (Note: Foster family and family home agencies (FFAs, FHAs) handle this for foster homes.) Section 131 of the Internal Revenue Code, however, exempts many small family care and foster homes from payment of any income tax on the net earnings (revenues less expenses) of the provider family. The key is serving one or more children with special needs in one's own home (i.e., the care provider's home). NOTE: Since we cannot provide tax advice, we urge those interested in Section 131 to discuss this matter with their C.P.A. or other tax advisor.
Independent Living. In California, independent living services (or programs) work to support individuals within their own homes and to provide them with tools, training, and strategies to live as independently as possible. Prior to about 1990, nearly all of these services were limited primarily to adults with developmental disabilities who, with time-limited training and perhaps some on-going support (beyond two years), could learn to handle their own affairs. When ILS (Independent Living Services) programs got going in the 1970's, the focus was on training (and counseling). Nearly all successful ILS programs quickly learned, however, that other services were often critical to success (e.g., assisting the person in dealing with Social Security, housing, transportation, or other issues). Now, some agencies have capitated rate contracts with their regional centers; others are funded on an hourly fee-for-service. The average hourly rate for one-on-one independent living services, across California, is somewhere in the $23 to $28 per hour range. It is uncommon for outlays per person per month to exceed $1,000, except perhaps for a month or two as the person is getting established in his or her own home. By the end of two years, the person typically receives an hour or two of service per week, costing under $300 per month. Some require no paid support services beyond two years.
Supported Living. Supported living is a relatively new living option in California. For individuals who will need substantial and on-going assistance of one kind or another, supported living services (SLS) can enable that person (or, sometimes a few people living together) to live safely and well in their own home. SLS are typically provided by agencies, but consumers, parent/families, independent vendors, and circles-of support can be the service delivery vehicle. While there may be some teaching-learning, other personal services (e.g., housekeeping; personal care; help with community access) are often paramount. There can be around-the-clock services, if such is required. The pattern of service (how much? what kind? when? who?) is figured out on the basis of some sort of person-centered planning process. Since services are so individualized, they have included creative responses to long-term health-care needs (e.g., visiting nurses to help with injections).
Again, some agencies have managed-care-type contracts with their regional centers; others price services on an hourly basis. The average hourly rate, across California, varies by service sub-category, with habilitation and training typically costing more per hour than personal assistance. Supported living service providers typically help those they serve to access generic services, such as California's In-Home Supportive Services (IHSS) program. Even then, average monthly costs vary widely, and can be as high as the cost of living at a state developmental center, although this is rare. A pilot project, entitled Community Supported Living Arrangements (CSLA), which ended September 30, 1995, revealed an average supported living service cost per person per month of $2,240, in March 1995. (Note: This excludes the cost of basics, such as food, clothing, shelter, transportation, and personal incidentals.) As can be seen in the chart below, for most people, the cost was well below this number.
As with other residential services, the level of funding and the nature and extent of services depends on the needs of the individual. Cost-effectiveness regulations typically constrain funding to what would be spent if the person lived in a licensed place. For adults living away from their families, what is currently being spent often serves as a first approximation to level of need. In the case of adults moving away from family homes for the first time, the question is what level of traditional residential service would be appropriate to his or her needs.
What's best? Various kinds of living arrangements have pros and cons. And, for any given individual or family, a feature generally considered a plus may be judged a minus. Few generalizations are possible. Independent living and supported living are for adults. In the case of children, the options to be considered might be: CCF (e.g., small family care home); ICF/DD-H or DD-N; or FFA (foster home). Aside from capacity to address physical health issues (e.g., frequent injections or other invasive procedures) and the availability of financial and other resources, one may find no consistent differences between providers in one category and another. Consider, for example, emphasis on relationships with non-disabled others, or welcoming the involvement of close family. In these and other areas, inquiry is important, because one will find providers in each category who do these things well, and others who give such matters little attention.
Finding versus creating. Broadly, one either finds an existing home, program, or service that is likely to meet the needs of the person, or one creates such or gets others (e.g., an existing agency) to create such. Beyond what is typical, when creation is involved, substantial innovation is possible. To illustrate, a few years ago, we helped some people create a licensed, Level 4F home for one person. More recently, we were part of a group who put together a Level 4G, licensed home for three adults, with many supported living values and concepts built-in. As a third example, if one liked a foster family arrangement, but wanted the foster family to receive the bulk of the Level 4 funding, a family (or group) might seek to perform the functions typically handled by an FFA. Such a home would typically be licensed within the small family care home category. The family (or group) might provide some of the respite and other services themselves, and perhaps hire someone part-time to handle administration and to problem-solve. Supported living arrangements can (and should) be unique to the individual.
Considering basic needs (food, clothing, shelter, utilities, transportation) separately from services. When creating a living arrangement, and figuring out how to fund what is needed, it's helpful to consider housing and other basics separately from support services. What number and kinds of living spaces are needed and wanted? Where should the dwelling be located? What would it cost to build or purchase (and modify) the place? Does it make sense to lease or to buy? What's a reasonable budget for food? for rent and utilities? for ordinary transportation? (Note: In the case of Level 4 CCFs and ICF/DD-Hs and Ns, one may be able to afford "more house" than if the home were to operate on Level 3 or 2 funding. Without earnings, Section 8 Rental Assistance, shared housing, or family support, individuals living in their own homes may have trouble affording a studio or one-bedroom place, especially where housing costs are high.) Of course, existing care-providers, as well as new care-providers using their own homes, come with the place that will be used. Getting funds to meet fire/life/safety and accessibility requirements can be a problem in all of these cases, especially if the person to be served is non-ambulatory. Aside from one-time outlays (e.g., accessibility modifications), the on-going cost of food, clothing, and shelter is met by SSI, a person's earnings from work, and sometimes other sources (e.g., a special needs trust).
Steps in creation. Here's an overview of what it may take to create the kinds of living arrangements noted above, along with some general ideas of cost and time. In each instance, it is important to think through:
What are the licensing/vendoring requirements for this kind of arrangement?
Where will working capital and on-going operating funds come from?
NOTE: (1) Nothing should be inferred about the sequencing of steps. Some steps must be completed before others. Parallel completion of some steps is possible. Some steps need to dovetail at the right time to minimize costs. (2) In foster and small family care homes, if the child is okay moving back and forth between that home and the family home, and if the child's parents want a consistent pattern of movement back and forth (e.g., every other weekend with the natural parents), this can make recruitment easier.
Type of home
Samll, independent foster or care home (owner-operated)
Steps
1. Recruit person or family with existing home, able and willing to meet the person's needs and expectations.
2. Assist in making accessibility and fire/life/safety modifications.
3. Assist through licensing process.
4. Assist in submitting Program Design and negotiating the needed service level with regional center.
5. Complete regional center paperwork for vendorization.
6. Negotiate program, service evaluation, and other processes (e.g., relationships with the natural family).
Time
A few months. (The licensed home for one took 7 months.)
Expense
1. Time/energy of interested people doing recruitment.
2. 100 to 150 hours of consultant time.
3. Modifications of the home (accessibility; fire/life/safety).Samll, independent foster or care home (owner-operated)
Foster home, under Foster Family or Family Home Agency
Steps
1. Agency recruits, where the person (or family) wants the service to be provided.
2. Assist in making accessibility and fire/life/safety modifications, if neither the foster family nor the agency is in a position to do that.
Time
Indefinite. Much depends on recruiting efforts and the attractiveness of the financial and service package.
Expense
1. Agency recruits.
2. Modifications of the home (accessibility; fire/life/safety).
Agency-operated care or group home (CCF)
Steps
1. Recruit agency or create an entity (e.g., non-profit corporation, partnership, proprietorship) to manage the home.
2. Lease, buy, or build a home in the right place with the right features.
3. Make accessibility and fire/life/safety modifications.
4. Complete licensing process.
5. Submit Program Design and negotiate the needed service level with regional center.
6. Complete regional center paperwork for vendorization.
7. Design and implement management, program, staffing, financial, and other processes (e.g., client and staff records systems), including admission procedures and on-going service evaluation.
Time
A few months to 2+ years. (The licensed home for three, with purchase of the house by interested investors, took 9 months.)
Expense
1. Time/energy of interested people.
2. One or more consultants: e.g., housing person; program person. More hours.
3. Down payment, local match, dollars for furniture, equipment, possible vehicle, accessibility, fire/life/safety.
4. Working capital of several thousand dollars.
ICF/DD-H or DD-N
Steps
1. Recruit agency or create an entity (e.g., non-profit corporation, partnership, proprietorship) to manage the home.
2. Lease, buy, or build a home in the right place with the right features, with careful attention to licensing, certification, and fire/life/safety requirements.
3. Make accessibility and fire/life/safety modifications, including doors off bedrooms (if non-am), hard-wired alarm system, residential sprinkler system and/or solid-core, self-closing doors.
4. Recruit and retain key staff (QMRP/Administrator and R.N.) and specialists (e.g., Dietitian; Physical Therapist; Recreation Therapist; Pharmacist; Psychologist; Speech Pathologist).
5. Submit Program Plan, including copies of contracts and credentials for QMRP, Nurse, and other specialists, along with samples of Comprehensive Functional Assessments and Individual Service Plans, and training plan for direct-service staff.
6. Develop (or adapt) written policies and procedures manual(s), emergency plans, transfer agreement with acute care hospital, client records system, active treatment protocols, including data collection procedures, etc.
7. Complete licensing process.
8. Provide for gap and lag funding.
9. Design and implement management, program, staffing, financial (including Medi-Cal authorization and billing system), and other processes, including admission procedures and on-going evaluation of services.
10. Get certified (i.e., meet federal as well as state standards or conditions for participation in the Medi-Cal program).
Time
Several months to 2+ years. (If key people have no prior experience, and do things themselves, can easily be 2+ years.)
Expense
1. Time/energy of interested people.
2. One or more consultants: e.g., housing person; program person. More hours.
3. Down payment, local match, dollars for furniture, equipment, possible vehicle, accessibility, fire/life/safety.
4. Working capital of several thousand dollars.
NOTE: Compared with Level 4 CCF, both physical facility and other costs, as well as working capital needs, are likely to be larger by $15K - $45K.
Independent Living Service
Steps
1. Recruit agency, or find an existing vendor (e.g., tutor; adaptive skills trainer) who is willing and able to provide the service.
2. Be assessed for needs, preferences, and life goals.
3. Secure (if possible) Section 8 Rental Assistance, IHSS, and other generic services for which the person qualifies.
4. Negotiate an individual service plan reflecting what is needed and wanted, and what the provider offers.
5. If not living where you want to live, find the right place to live.
Time
A few days, weeks, or months. One to three months is not uncommon
Expense
1. Time/energy to find the right provider.
2. Very few (or no) consultant hours needed.
3. Typically, one seeks to rent a place that meets accessibility needs.
Other adaptive equipment (e.g., communication) can be part of the plan.
Supported Living Service
Steps
1. Recruit agency, find an existing vendor (e.g., tutor; adaptive skills trainer), or decide as individual, family, or circle of support to provide the service.
2. Determine and express needs, preferences, and life goals.
3. If provider is new, submit a Service Design and negotiate rates or a contractual arrangement for a unique service.* Complete paperwork for vendorization.
4. Secure (if possible) Section 8 Rental Assistance, In-Home Supportive Services (IHSS), and other generic services for which the person qualifies.
5. Develop an individual service plan reflecting what is needed and wanted, and what others can (and will) do.
6. If not living where you want to live, find the right place to live.
7. Negotiate (or design and implement) management, service, personnel, financial, service evaluation, and other processes.
Time
A few days, weeks, or months. One to three months is not uncommon. More time is likely, if the consumer, family, or friends will be the vendor.
Expense
1. Time/energy of interested people.
2. Very few (or no) consultant hours needed, unless the consumer or his/her representatives will be the vendor.
3. Typically, one seeks to rent a place that meets accessibility needs. Other adaptive equipment (e.g., communication) can be part of the plan.
* Regional centers may waive certain Service Design requirements for individuals and families who will be providing services for one person or household.