Chapter 5: Making Sure Needed Supports Are in Place

Introduction

While finding a desirable place to live that meets one's needs is important, it's only a part of what is necessary to live a life of self-determination. The other part is getting the services and supports needed to stay in the home and become an active community member. Understanding which services and supports are available and how they are accessed is crucial. This chapter presents an overview of Minnesota's service system.

Minnesotans with disabilities find and receive the services they need through a process called "case management." State law requires each county to provide case management to all persons who have, or might have, "mental retardation or a related condition" that need available services. Case management is defined as "identifying the need for, seeking out, acquiring, authorizing, coordinating, and monitoring the delivery of services to, and protecting the rights of, persons with mental retardation by an individual designated by the county board." Some families know their case manager by the term "county social worker."

Through case management the county establishes eligibility, assesses service needs, and develops an individual service plan (ISP) for the consumer. The ISP is developed with the consumer and his or her parents, and outlines the type of services and supports the consumer needs, based on his or her needs and desires. An ISP must be developed for each person with disabilities who requests and needs services.

Identifying Service Options

The array of services available can be confusing, especially when distinguishing the services a person receives from how they are funded. The table on the next page outlines community services and funding sources related to consumer controlled housing. Descriptions of the services and funding sources follow:

Key to Abbreviations (also see Appendix C)

CHS - Community Health Services Program
CSSA - Community Social Services Act
HCBS - Home and Community-Based Services
MA - Medical Assistance
MHFA - MHFA Accessibility Housing Loan
MSA - Minnesota Supplemental Assistance
SILS - State SILS Grant Program

Note: CSSA includes services which a county may fund with CSSA monies; however, not all counties include all the listed services in their CSSA plans.

Descriptions of the Services

A number of services are available in Minnesota to support people with developmental disabilities who live in their own homes. These services are presented here without regard to funding sources. It should be noted that certain means-test and disability-related eligibility standards may determine whether any specific service is available to a particular individual.

Adult Foster Care

This provides a living arrangement for persons with developmental disabilities over 18 years of age who are unable to live independently. The purpose of the program is to help people to gain or maintain as high a level of independence and community integration as possible. Foster care for adults can provide supervision, personal care, assistance, and protection.

Adult foster care in Minnesota has traditionally been provided in the home of the foster care provider and the adult in need is included in the family. However, an adult with developmental disabilities who has purchased his or her own home may be able to receive needed supports by renting all or a portion of the dwelling to an adult who can move into the home and become licensed as a foster care provider. In other instances, parents have purchased homes for their sons or daughters and have leased them to service providers who hold adult foster care licenses.

Assistive Technology

This includes devices, equipment, or combinations of methods which improve a person's ability to perform the activities of daily living, personal control of or access to the person's environment, or his or her communication in the community. This service also pays maintenance, repair, and rental during repair of these types of devices.

Caregiver Living Expenses

The room and board costs of a caretaker to live with a person who has a disability may be eligible for payment under certain circumstances.

Caregiver Training and Education

Costs of this training can be reimbursed for primary caregivers who provide supervision and care and are not employed by a corporation.

Chore Services

These services include routine housekeeping tasks, minor household repairs, shopping, lawn care, and snow shoveling provided by county personnel or someone who has a contract with the county.

Consumer-Directed Community Supports

Consumers using this option under the Developmental Disabilities Waiver Program have the ability to design individualized services, including housing, based on their needs, interests, and desires. Consumers and families have more control over the funds used to purchase services on their behalf.

Consumer Support Grant

This is a cash program designed to give adults with disabilities or families who have children with disabilities more control, flexibility, and responsibility in arranging for needed support services. Examples of services are personal care assistance and in-home supports. Participants hire, train, and supervise the person providing the support services. Grant awards are based on the state share of the costs for long-term support services that would have been used by the person with a disability.

Environmental Modifications

These are structural changes to the residence of a person with a developmental disability to increase accessibility or mobility or to provide protection from injury. Such aids include wheelchair ramps, elevated bathtubs, widened doorways, shatterproof windows, lowered kitchen work surfaces, shower and bathtub seats, etc. Some adaptations to vehicles and adaptive equipment also may be eligible expenses.

Home Health Care Services

These include intermittent or part-time nursing services furnished by a home health agency or a registered or licensed practical nurse under the direction of a physician when home health agency services aren't available. These also include medical supplies and necessary equipment and appliances that are prescribed by a physician for the care of the individual and are suitable for use in the home. Services of a home health aide are provided under the supervision of a professional nurse who is assigned by a home health agency.

Homemaker Services

These include general household activities and ongoing monitoring of a person's well-being. They are provided by a trained person when the person regularly responsible for these activities is temporarily absent or unable to manage the home and care for him- or herself or others in the home. Services include meal preparation, cleaning, repairs, laundry, shopping for food and supplies, and other routine household care.

Housing Access Coordination

This provides assistance to persons attempting to acquire housing in the community. It includes counseling and assistance in identifying options and making choices about location, type of housing, roommate selection (if any); identifying accessibility requirements (including the need for modifications); and planning for ongoing maintenance and repair (if this will be the person's responsibility), financial resources, and eligibility for housing subsidies and other assistance. A purpose of this service is the assurance of separation of housing from service provision.

Housing Service

This helps individuals to obtain, maintain, and improve housing and to modify existing housing.

In-Home Family Support Services

These are home-based services designed to enable the family to care for and maintain the family member with developmental disabilities in the home and may include training and counseling for the family member and his or her family.

Money Management

This assists eligible individuals in the management of their income so that they are able to obtain a stable level of economic functioning within the limits of their present financial resources. The service includes consumer education, debt adjustment, financial counseling, and direct vendor payment.

Personal Care Assistance (PCA)

Personal care assistance services are designed to support the individual with activities of daily living that he or she is unable to perform because of a disability. The services require supervision by a qualified person and are usually provided by a private vendor. People wishing to hire and train their own PCAs without using a traditional vendor may be eligible to use a fiscal agent option.

Personal Support

This is non-medical care, supervision, and assistance provided in the person's home or in the community to achieve increased independence, productivity, and inclusion.

Private Duty Nursing Services

These services are provided by a registered nurse or licensed practical nurse under the general direction of the individual's physician in his or her own home. The services are provided only when the person requires individual and continued care beyond that available from a visiting nurse or home health care agency.

Semi-Independent Living Services (SILS)

SILS is a system of support that enables persons who otherwise would have to reside in more restrictive settings to live in the community. SILS include training, counseling, instruction, supervision, and assistance; they are provided in accordance with a person's individual program plan for fewer than twenty-four hours per day. A friend or family member may provide SILS under certain circumstances if he or she is approved by the county. The services are directed at maintaining and improving the person's functioning level and include the following areas:

• Meal planning and preparation
• Shopping
• First-aid training
• Money management
• Administration of medications
• Use of the telephone
• Personal appearance and hygiene
• Obtaining and maintaining housing

SILS are provided in the home of the person with developmental disabilities.

Specialist Services

These provide assessments, program development, training and supervision of staff and caregivers, monitoring of program implementation, and evaluation of service outcomes to assure the competency of staff and caregivers. This service is for persons with needs in the areas of behavior management, augmentative communication, personal health, functional motor skills, social skills, leisure/recreational skills, or independent living skills.

Supportive Living Services (SLS)

These are home-based support and training services provided daily in a place where no more than six adults or three children with developmental disabilities reside.

Transportation Services

Transportation is often available through day training and habilitation services or employment programs. The Developmental Disabilities Waiver Program also allows payment to friends, relatives, or others who provide transportation services to the person with a disability.

Twenty-four Hour Emergency Assistance

This is ready access to a qualified provider for on-call counseling and problem solving and/or immediate response for assistance at a person's home due to a health or personal emergency. It can include electronic personal emergency response systems.

Funding Sources

This section describes some of the primary sources of funding for the services discussed above.

Medical Assistance (Medicaid)

This pays for a range of health services for eligible individuals. The program is operated by the state with federal and state funds. To be eligible for Medicaid funding because of disability, persons must meet the same disability criteria as those used for the Social Security Disability Income (SSDI) program. In general, there are income and asset eligibility standards. However, the Social Security Administration has work incentive options called 1619 (A) and (B), which allow people to keep more of their earnings without being penalized. Income and asset eligibility standards must be met. Medicaid is applied for through the county social services office.

Medicare

Medicare is a federal program that pays for services for people who have disabilities and are drawing funds from Social Security Disability benefits. Minnesotans with disabilities who are on Medicare may be eligible to participate in the Medical Assistance for Employed Persons with Disabilities (MA-EPD) program. This enables them to work and save earnings without losing access to health care and long-term support services.

Medicaid Home and Community-Based Services (HCBS)

This is a federal program allowing Medicaid funding of certain services to people living in the community (including with their own families) who, without those services, would be at risk of living in state institutions or specialized group homes. Both adults and children with mental retardation and related conditions are eligible to receive HCBS if:

1. They need the level of care provided in intermediate care facilities for persons with mental retardation (ICF/MR) (i.e., Medicaid certified state institutions and specialized group homes);
2. They are eligible for Medicaid; and
3. They actually live in an ICF/MR at the time or are considered "at risk" of being placed in one.

The risk status is determined through a screening process in which the case manager, the person requesting services, the person's legal representative, and a Qualified Mental Retardation Specialist (the case manager often serves in this role) review the assessment information about the person's strengths, and need for support, supervision, assistance, and training, and make a determination of the level of care (the risk status) the person requires. The person and his or her legal representative, if one has been court appointed, make an informed choice from feasible alternatives of the type and amount of services, including the choice between ICF/MR and HCBS (waivered services), and among the waivered services available.

The HCBS has been an extremely significant development in the provision and funding of services to Minnesotans with developmental disabilities. Because it funds services that are delivered on an individual basis to the place where the individual resides, it breaks the historical bond between place of residence and receipt of service. When the person changes providers and/or residence, the funding is now able to follow. For this reason, HCBS is one of the most important programs in the service system that enables the development of consumer controlled housing.

Home and Community-Based Services are applied for through the county social services office. The county case manager establishes eligibility, assesses service needs, facilitates the screening process, and develops an Individual Service Plan (ISP) in coordination with the person and his or her legal representative, if one has been court appointed. The Department of Human Services reviews the screening team's decisions. Based upon this review, Medical Assistance payments for waivered services can be authorized.

Services funded by a waiver can be provided in a home that is owned or rented by an adult with developmental disabilities when the screening team determines that the home is an appropriate service site. In such instances, the county board may grant a variance from the requirement that the site where the supportive living services are delivered is certified as an adult foster care home.

Minnesota receives a specific number of allocations from the federal government to serve persons eligible for waivered services. In the summer of 2000, there were about 7,900 persons approved to receive waivered services. A portion of these resources is reserved for persons currently living in ICFs/MR (conversions) and the remainder is available to persons currently living in the community but have been determined to be at risk of ICF/MR placement (diversions). The number of people each county is able to serve through HCBS is determined by allocation by the State Department of Human Services, upon review of requests submitted by the counties. Although many counties have waiting lists for HCBS allocations, the law requires them to screen each person who requests HCBS in a timely manner.

Community Social Services Act (CSSA)

CSSA funding is a combination of state, federal, and local moneys which counties have available to fund a variety of community services. Within certain guidelines, counties can determine which services they will fund, how much service will be provided in each service area, which groups will be served and to what extent, and financial eligibility guidelines. Counties must fund services in accordance with their annual CSSA plan, which is submitted annually to the State Human Services Commissioner for approval. By law, all county residents must be allowed input into their county plan.

County Funds

Minnesota counties fund certain human services with monies that have been raised by county tax levies. These types of funds are frequently used to match the state and federal funding sources listed in this section, but in some cases services which can't be funded by other sources are paid for with these county funds. The services and the amounts expended for them can vary widely among the counties.

Minnesota Housing Finance Agency (MHFA) Loan Programs

The following loan products are operated by MHFA. For brochures and a listing of participating lenders or local administrators, contact MHFA. (See Chapter 9 for contact information.)

Fix-up Fund Accessibility Loans

This program provides below-market interest rate loans to homeowners to make accessibility improvements to their home. There is no limit on household income.

The borrower or a resident of the borrower's household must have a permanent physical or mental condition that substantially limits one or more major life activities. Eligible improvements are those that will allow the resident with a disability to reside in the home.

The homeowner provides bids and estimates for the proposed improvements at the time of loan application and arranges for the completion of the improvements after loan closing. The loans are provided by participating banks, credit unions, and housing agencies.

The Great Minnesota Fix-up Fund

This program provides below-market interest rate loans to homeowners to make all types of permanent improvements to their home, including accessibility improvements. The interest rate is based on household income. Borrowers must have a gross annual income of $55,000 or less.

The homeowner provides bids and estimates for the proposed improvements at the time of loan application and arranges for the completion of the improvements after loan closing. The loans are provided by participating banks, credit unions, and housing agencies.

Rehabilitation Loans and Revolving Loans

These programs provide loans to homeowners for basic permanent repairs and to make basic permanent improvements to help a resident with a disability to live more independently and safely at home. Homeowners must have an annual adjusted gross income of $18,000 or less and meet an asset limitation. (Adjusted gross income means income from all sources, including those that are not taxable. A deduction of $1,000 per household resident will be subtracted from gross income to determine adjusted gross income. There is also a special deduction for extraordinary medical costs, which is determined by a local administrator.)

• Rehabilitation Loan Program: This type of loan must be repaid only if the home is sold, transferred, or is no longer owner-occupied within ten years of receiving the loan. Funding is limited and may be allocated according to local priorities.
• Revolving Loan Program: This loan is at a below-market interest rate and is made to homeowners who are not eligible for other home improvement programs.

Community Health Services Program

This program, administered by the Minnesota Department of Health, provides funding to counties for health-related home care programs. Each county in the state submits biannual community health plans outlining services it intends to fund.

Future Developments in Services and Funding

Support services for persons with developmental disabilities are very comprehensive due to the efforts of Arc Minnesota and other advocacy organizations. However, as you can see, the system has become complicated due to the variety of services, funding streams, and rules.

Because of the large amount of public funding invested in these services, there are often efforts to change the system. Services currently available may change in the future. When going ahead with consumer controlled housing options, it is important for people to be aware of possible changes that may affect them.

The current trend in the service system involves giving consumers and their families a stronger voice in selecting services and providers. In these models, consumers and their families have more control over the funding used to purchase support services and assume more responsibility in ensuring that the services are delivered. This can involve using informal support services such as relatives, friends, neighbors, and general community resources.

These models are based on the success of the Family Support and Consumer Support Grant Programs, and various voucher programs operated by counties. These models often result in consumers and their families spending less money while obtaining more services and being more satisfied. This is due in large part to their ability to use informal support services that aren't typically available to traditional service providers.

These models have different names. They are referred to as "self-determination," "consumer directed community supports," "PCA Choice," "Consumer Directed Home Care," and "Fiscal Agents." Consumers and families wishing to participate in these models should be prepared to take a more active role in dealing with service providers, budgets, contracts, and payments. They should also commit to learning more about potential issues dealing with employees and taxes.

Following the trend to give consumers and families more control over services is a trend to develop managed care options for persons with disabilities. The traditional managed care model involves a buyer contracting with an organization to provide an array of services for a set fee. The managed care organization accepts some financial risks if it doesn't receive enough money to pay for the services it actually delivered. Because of this risk, managed care organizations frequently develop a long list of procedures designed to control costs and limit access to services.

Managed care models are very common in providing acute health care services to people who don't have disabilities. Experiments in several states to serve persons with disabilities through managed care have not been successful. However, there are likely to be continued efforts in Minnesota to create a managed care model specifically for persons with disabilities. Consumers and their families should monitor these initiatives, since the traditional managed care model conflicts with the trend to give consumers and their families more control over services.

Finding an Agency to Provide What You Want

Consumer controlled housing is about much more than whose name is on the lease or mortgage. It's about people having homes of their own - homes where they control what happens, who comes and goes, and whose needs and pleasures come first. Finding a service-providing agency that is willing and able to balance the desires of the consumer with its "administrative efficiencies" and usual ways of operating is a serious undertaking. Such agencies are often difficult to find, but finding them makes immeasurable difference in the benefits, stability, and stresses of consumer controlled housing.

Because people differ, no one set of criteria can be written to determine which agency will best satisfy which people. Questions like the following, however, are worth asking all potential service providers when people are attracted to the idea of consumer controlled housing.

• Does the service provider accept me as having a right to control my own life? There is an often quoted business credo: Rule 1 - the customer is always right. Rule 2 - if the customer is ever wrong, refer to Rule 1. It may be too much to expect a service provider to operate entirely from that perspective, but how committed is the provider to trying? How will you deal with those situations in which the provider feels it can't follow these rules? You should expect some disagreements and feel comfortable with what must be done to resolve them.
• Is the service provider committed to consumer controlled housing and able to understand how I want to live? Consumer controlled housing depends on serious and effective efforts to respect how the consumer wants to live. It's important to know how the service provider goes about gaining such knowledge. What kinds of planning practices are used? What kinds of experience does the agency have with such practices? What other methods are used to figure out how people want to live? How often and with whom are service support plans reviewed? Are mechanisms in place to attend to changes in people's interests, desires, and needs?
• Does the service provider respect my house? Delivering services in someone else's home and respecting entry into their home is a new proposition for many service providers. It's extremely important that certain things are clarified about the resident-service provider relationship. What can you expect when staff arrive? Will they knock and wait or will they enter? Where will they park? Will they have breaks? When and where? Will they have access to the phone, TV, etc., and how will permission be granted - once or each time?
• Are other people happy with the agency in the areas that are important to me? Often, the best way to get an idea if an agency will be a good match is first to list characteristics you see as most important (e.g., responsive; flexible; respectful; dependable; supportive) and then to ask other people who receive services from the agency about those characteristics. Not all agencies are alike! Case managers and local advocacy groups can often help identify the characteristics that are most important to you, and can answer questions about the presence of the characteristics in different agencies.
• Will the people who provide services to me be well-trained, well-supported, and well-treated by the agency? The quality of life for people living in their own homes is very much affected by the attitudes, skills, and spirit of support staff. Agencies that treat their staff well, provide the supports they need to do their job, and give their staff the compensation (pay and benefits) and respect they deserve for the job they do are more likely to have staff who are effective, respectful, and stable. Ask about how agencies treat their employees.
• Do the staff members of the agency who will work with me have the initiative, knowledge, commitment and creativity to meet my needs? People with disabilities face many challenges in their lives. For some, medical challenges and emergencies are to be expected and staff must know what to do. For others, the primary challenges are social, and effective support staff need to show initiative, commitment, and creativity to help people become included in the community in which they live. It's important to talk to the staff who will be providing supports to make sure that the challenges and issues that are most important to you are ones that staff show sufficient initiative, knowledge, commitment, and creativity to satisfy your expectations. If they don't, talk to the agency management about needed training or different personnel. If you aren't satisfied, talk to another agency.

Unless they're involved in assisting and supporting people they serve to live in their own homes, service providers and case managers can't be considered to be at the leading edge of the evolving services system. Service users have a right to have their interest in controlling their housing taken seriously. When people feel providers don't support their desire to have their own homes, they should feel empowered to find new ones that do. Lists of agencies that provide support services in your area may be obtained from your county social services agency. Other assistance may be obtained from organizations listed in Chapter 9.

Working Cooperatively: A Service Provider's Perspective

Since the mid-1980s, when the first few families began working with the first few service providers to develop consumer controlled housing arrangements, many of the state's service provider agencies have come to view consumer controlled housing as an acceptable, workable setting in which to provide residential services to the people they serve. In fact, the Association for Residential Resources of Minnesota (ARRM), the state's largest association of residential service providers serving persons with developmental disabilities, now has an organizational policy statement which reads, "ARRM supports initiatives that support enhanced consumer choice of providers and services." This would include the owner's control of their residence.

In working with families over the past two decades, provider agencies have experienced their own challenges in developing consumer controlled housing arrangements. Arc Minnesota Board Member Lynne Megan, an administrator for REM Minnesota, Inc., the state's largest residential services provider agency, shares some of her agency's experience with consumer controlled housing, and offers persons with developmental disabilities and their families advice on how to work with the provider agency to assure that the person who controls the housing receives the maximum benefit from the arrangements.

Lynne's primary message is to assure that communication between the family and the provider is open and clear. She says it is essential that the expectations of everyone who is involved in maintaining the housing and service arrangements are made explicit from day one. To illustrate the importance of this, she tells of a family whose son her agency served in a trust-owned home. After the first year of providing services, the management was surprised when the family presented her with a long list of unmet expectations. Upon reviewing the list, the program director realized that most of the expectations on it had not been met, not because her staff could not or would not meet them, but because her agency wasn't even aware of them! Both the agency and the provider learned an important lesson in the importance of communication during this first year of the new housing arrangements.

Running a household is a complicated process that most of us take for granted. Responsibilities, relationships, preferences, rules, rights, and privileges all pose challenges to the general order, but are worked out effectively in well-run households. Who does the cooking, who pays the bills, who decides what color to paint the living room, who fixes the roof, and who makes the rules of the home are usually known to and accepted by all members of the household. But overlay on the operation of a typical household the unique aspects of a consumer controlled home for one or more person with developmental disabilities, and the challenges increase. The family(ies) and providers, one or more roommates (each with their own individual service plan), the live-in staff, PCAs, and program managers must work in concert to assure that minor "growing pains" don't mushroom into major problems that threaten the living arrangements.

To avoid the kind of conflicts that can arise, Lynne's experience has shown her the importance of all parties understanding one another's roles and duties, responsibilities and rights. Staff need to respect that they are working in the home of the people for whom they are providing services and often times the house is the property of one or more of their parents. Parents need to understand which staff are responsible for which duties. (Expecting the personal care attendant to do something about unplowed snow in the driveway is not realistic!) In the case of a home where one family owns the premises and members of other families live there, the family who owns must understand that all of the people who reside in the home have equal rights in regard to services received, and they must respect the roommates' needs, preferences, and privacy. The families who don't own the home and their sons or daughters shouldn't be expected to play second fiddle.

A clearly written lease is not only essential to covey the legal obligations of the property owner and the service provider, but is also a useful vehicle for recording the expectations of the family. In the Appendix, there is a copy of an actual lease agreement that one Minnesota family has signed with their provider agency. This lease agreement covers not only such standard lease provisions as rent payments and maintenance responsibilities, but it also includes a list of "Rules and Regulations" that covers such issues as the home's policy on pets and expectations on the care of the plumbing fixtures. This list can easily be amended by the family without having to renegotiate the lease. One section of the lease allows the family to '"inquire" about any proposed new housemate or staff person. The lease and its list of rules provide the family and the staff an effective means of "staying on the same page" with regard to expectations and responsibilities.

Informal Supports: Opportunities and Challenges

Many of the services and supports necessary for persons with developmental disabilities to live happily and successfully in their own homes can be, and are, provided not through government-funded programs but by family members, friends, neighbors, volunteers, roommates, and others at no charge. As more persons with developmental disabilities take up residence in their own homes in the community and become more fully socially integrated, the possibilities for identifying and using informal supports increase. Such arrangements can be highly satisfying for both the person providing and the person receiving the support. But when developing service plans, it's important to use caution not to become overly dependent or demanding of people who provide informal supports. People who willingly provide friendship and assistance can easily come to feel - and be - taken for granted or burdened beyond what they expected. When no contract is involved in the provision of services, problems with short-term reliability and long-term continuity can arise. In short, informal supports should be cherished and protected as the delicate gift they are.

Because of concerns about the shrinking availability of paid direct care staff, a number of initiatives have begun which will allow payment of family and friends who provide informal support services. The availability of these programs varies across the state. To learn more, contact your local Arc chapter or Arc Minnesota.

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A New Home for Mark and Mary

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A Guidebook on Consumer Controlled Housing for Minnesotans with Developmental Disabilities, a joint publication of Arc Minnesota and the Research and Training Center on Community Living, Institute on Community Integration (UAP), University of Minnesota.