Agency: Human Services

Line Item: Services for People w/ Disabilities

Function

The Division of Services for People with Disabilities (DSPD) is responsible for providing residential, day services, family support services, and attendant care for people with severe intellectual disabilities and other related conditions, including brain injury and physical disabilities. To receive services, people must have substantial functional limitations in three or more of the following life activities: self care, receptive and expressive language, learning, mobility, self direction, capacity for independent living, or economic self-sufficiency. The services provided range from limited family support to a full array of 24-hour services both in the community and at the Utah State Developmental Center. Services are also available in private Intermediate Care Facilities for people with an Intellectual Disability (ICFs/ID) with funding through the Department of Health.

Background

Intermediate Care Facilities for People with an Intellectual Disability (ICFs/ID)

The other system of providing Medicaid-supported services for individuals with disabilities is the mix of privately and publicly owned and operated ICFs/ID. Private institutions range in size from 12 beds to more than 80 beds. The ICF/ID system is funded through the Division of Medical and Healthcare Financing in the state Department of Health (Medicaid). The Utah State Developmental Center in American Fork, with a current population of 207 residents, is a state operated ICF/ID and is funded through DSPD. The ICF/ID system is approximately 70 percent financed with federal Medicaid funds. If qualified, patients have a right to be admitted to an ICF/ID. There cannot be a waiting list for ICF/ID services.

Home and Community-based Services (HCBS)

The state has also chosen to provide an alternative to the ICF/ID system, which is the Home and Community-based Services (HCBS) system. The HCBS system includes a range of services and supports for individuals in homes and apartments, including full residential placement arrangements located in community settings throughout the state. This system is also 70 percent funded by Medicaid as a result of being a Medicaid waiver program. Unlike ICFs/ID, this service is not an entitlement to eligible individuals, but can only be used to the extent that resources permit. Therefore, most states have waiting lists for services in their HCBS programs. The HCBS system is funded through the Division of Medical and Healthcare Financing of the state Department of Health which contracts with DSPD to operate certain of its HCBS waiver programs. This includes determining eligibility for services and serves as the gatekeeper for the HCBS systems. It is a Medicaid requirement that the health and safety service needs of individuals receiving services under the HCBS waiver be met. The Medicaid waiver requires a review of an individual's needs take place at least annually. Approximately 10 percent of individuals on the waiver are identified each year as having increased health and safety needs due to worsened conditions.

Waiting List for Home and Community Based Services

There are more eligible people desiring home and community-based services under the Medicaid waiver than there are resources available. This has caused a waiting list. This list has grown from 498 in 1990 to 1,940 in 2012. The number of people served since 1990 has grown from 1,989 to 4,778, which is a 140 percent increase.

Emergency Services

Each year, there are emergencies requiring immediate assistance from the division. A crisis may arise when persons with disabilities grow older and develop behavior problems or when natural caretakers become ill or die. A crisis may also arise in cases where individuals are committed to division services by the courts. Children aging out of state custody in the divisions of Child and Family Services (DCFS) and Juvenile Justice Services are also required to be served by DSPD. In FY 2012 the total number was 25. When these youth become adults they age out of DCFS custody and lose the funding previously provided for them as the funding stays with DCFS to pay for new children and youth with intellectual disabilities placed in state custody. As a condition of the federal waiver approval, Utah agrees not to drop current waiver recipients from service (State Medicaid Directors Letter -- Olmstead Update No. 4).

Portability between ICFs/ID and Home and Community-based Services

In 1998, legislation set in motion a process where individuals with developmental disabilities and/or intellectual disabilities who are receiving state services could move from institutional care (ICFs/ID) to Home and Community-based Services (HCBS), or the reverse. Since FY 2000, approximately 110 people have moved from the ICFs/ID system to services in the community. It was originally agreed that to facilitate these moves, state funds would also be transferred from the Department of Health, which funds ICFs/ID clients, to DSPD, which funds the community services program.

After several years of experience, it was observed that as individuals transferred out of ICFs/ID, new clients soon entered the system and filled the vacated beds. This added cost prevented the Department of Health from shifting any additional funds to DSPD for clients transferred to the community waiver services. Therefore, a moratorium was placed on further portability transfers in FY 2003. In FY 2005, the Legislature appropriated new funding for portability to the Department of Health which allowed for some individuals to transfer to community service. Since that time, additional appropriations to allow portability have been inconsistent.

Statutory Authority

Utah Code Title 62A, chapters 5, 5a, 5b, and 6 describe the state's program of services for people with disabilities.

Chapter 5:

• Part 1: Creation and duties of the division
• Part 2: Utah State Developmental Center
• Part 3: Admission to a facility for individuals with an intellectual disability
• Part 4: Support to families for home-based services

Chapter 5a: Creates the Coordinating Council for Persons with Disabilities.

Chapter 5b: Sets out rights and privileges of a person with a disability.

Chapter 6: Deals with sterilization of a person with a disability.

In addition to state law, many functions provided by DSPD have provisions detailed in federal law. Those federal law references, where available, follow:

• 42 USC 1396a-n: State Plans for Medical Assistance
• 42 USC 1396r-3: Correction and Reduction plans for intermediate care facilities
• 42 CFR 440.150: Intermediate Care Facility for the Mentally Retarded Services
• 42 CFR 441.300 et. seq.: Home and Community Based Services - Waiver Reqs.
• 42 CFR 442.15 et. Seq.: Provider Agreements
• 42 CFR 483.440: Condition of Participation: Active Treatment Services

Intent Language

The Legislature intends the Division of Services for People with Disabilities (DSPD) develop several options to measure the safety of individuals in its care and bring these measures back to the Subcommittee for review and input during one of its 2012 interim meetings. After receiving input from the Subcommittee, DSPD begin to report the measure regarding safety of individuals in its care in the Output and Outcome Measures report provided annually to the Social Services Appropriations Subcommittee.

The Legislature intends the Division of Services for People with Disabilities (DSPD), in consultation with stakeholders, providers, and the state Medicaid agency, explore options for a tier approach for individuals waiting for services to be utilized as an alternative or in addition to programs currently funded as part of the FY 2013 DSPD appropriations. It is further the intent of the Legislature that these efforts, along with recommendations, be reported back to the Social Services Appropriations subcommittee by January 2013.

The Legislature intends the Division of Services for People with Disabilities (DSPD) use FY 2013 beginning nonlapsing funds and any one-time funding appropriated for FY 2013 to provide services for individuals needing emergency services, individuals needing additional waiver services, individuals who turn 18 years old and leave state custody from the divisions of Child and Family Services and Juvenile Justice Services, individuals court ordered into DSPD services, and/or lease expenses.

Performance

During the 2012 General Session of the Legislature, Issue Brief -- FY2013 -- DHS -- Services for People with Disabilities -- Output and Outcome Measures was presented showing a seven year history of DSPD output and outcome measures. An update of these output and outcome measures will be provided during the 2013 General Session of the Legislature.

Funding Detail

The division has statutory non-lapsing authority and will typically have some amount shown in Beginning Nonlapsing. The statute restricts use of nonlapsing funds for one-time purposes unless authorized by the Legislature.

Medical and Health Care Financing - Medicaid

Utah's Medicaid agency is the Division of Medical and Healthcare Financing (DMHF) in the Department of Health. This agency coordinates with DSPD to establish rates and eligibility, prepare revisions and renewals of Utah's Home and Community-based Services (HCBS) waivers, process reimbursements for Medicaid funds, and train and monitor for compliance. DSPD administers three HCBS waivers: 1) Community Supports, 2) Acquired Brain Injury, and 3) Physical Disabilities. DMHF also contracts with and provides administrative oversight for private Intermediate Care Facilities for people with an Intellectual Disability (ICFs/ID).

Non-Lapsing Authority and Attrition

DSPD has nonlapsing authority to carry any unused funds from one fiscal year into the subsequent fiscal year. These funds can only be used for one-time expenditures unless otherwise authorized by the Legislature (UCA 62A-5-102(7)). Nonlapsing balances are often created because DSPD generates savings through attrition when individuals receiving services exit the program. Attrition can occur when an individual moves out of state or relocates into institutional care, the individual dies, or the individual no longer meets the eligibility requirements. The 2004 Legislature approved a plan to allow the use of nonlapsing funds to cover ongoing costs associated with emergency services and individuals who age out of foster care with the understanding that internal savings will generate the ongoing base funds needed to continue their services in future years. This authority has been annually reviewed and then renewed through adoption of intent language.

Account for People with Disabilities -- General Fund Restricted

In 1995, the Legislature created the Account for People with Disabilities (UCA 63A-5-220) consisting of proceeds from the sale or lease of lands and facilities at the Utah State Developmental Center (USDC) located in American Fork. By statute, the Legislature may only appropriate lease or rental receipts or interest earned on the fund itself. After approval by the division director in consultation with the department executive director, these funds may be used for programs described in Title 62A, Chapter 5, which is the DSPD section of the code.

For analysis of current budget requests and discussion of issues related to this budget click here.

Program: Administration - DSPD

Function

The State Administration Office provides policy development, quality assurance, general management, and budget and fiscal oversight for the state operated support coordination system, also known as the case management system. In addition, this office contracts for private and public service providers. They also oversee the Utah State Developmental Center at American Fork. The office also develops policy recommendations.

Funding Detail

Program: Service Delivery

Function

The division operates with a single region spanning the state for service delivery. The regional service delivery staff provides coordination for service recipients. The region is the point of entry for people seeking services from the division. The region contracts for services with private providers and oversees and evaluates the quality of services delivered.

Funding Detail

Program: Utah State Developmental Center

Function

The Utah State Developmental Center (USDC), formerly known as the Utah State Training School, is a publicly funded and managed Intermediate Care Facility for Individuals with an Intellectual Disability (ICF/ID). The center provides 24-hour residential and active treatment services. Specialized services include: medical and dental services; physical, occupational, speech, and recreational therapy; psychological services; social work; and day training.

In December of 1989, a class action lawsuit, known by the title of Lisa P., was filed against the state by the Disability Law Center and the Association of Retarded Citizens (ARC) of Utah on behalf of all residents of the USDC. A settlement agreement was entered into in October of 1993 that required an evaluation of each resident to determine appropriate placement. Due in large measure to the terms of the settlement agreement, USDC has seen its population decrease from about 425 in 1991 to 207 today.

The Developmental Center has restructured its delivery system. This has involved remodeling many of its dormitory-type housing units into apartments with one to three bedrooms which has provided more independence and privacy for its residents. This has altered the care delivery system at the center, requiring a greater staff-to-client ratio. This has served to decrease the behavior problems of residents and improve their quality of life.

Funding Detail

Program: Community Supports Waiver

Function

The Community Supports (Medicaid Home and Community-based Services) Waiver allows states to provide services to individuals using Medicaid funds outside of standard institutional programs. Participants must be qualified for admission to an institution such as an ICF/ID. Assistance that may be provided under the waiver program includes a multitude of services ranging from family support to 24-hour residential care.

Residential Services include five basic models which fall under two broad categories: 1) supported living and 2) supervised living.

1. Supported Living -- Trained staff are available to provide support services as needed for less than 24 hours a day. There are two models of supported living services:

Supported living arrangements: Consumers live independently in their own homes or apartments and receive periodic assistance and training with money management and other skills necessary for independent living.

Supervised apartments: Consumers live in apartments with two or three people. Apartment supervisors are available to provide whatever assistance may be needed.

2. Supervised Living -- Trained staff are available to provide supervision and support 24 hours a day. There are three models of supervised living services:

Professional parent homes: These are family homes in which one or two children beneath the age of 22 with disabilities live with 24-hour support in a very intensive habilitative family arrangement. The families are supported by trainers and consultants and also receive respite care.

Host homes: These services are provided for individuals who turn 18 years of age but have been living in professional parent homes and wish to continue to live in that family home with other adults. The professional parent assumes more of a peer role with the individual and the individual works with the trainer in the acquisition of skills that allow independence as an adult. The person may receive support and/or supervision up to 24 hours per day.

Group homes: These are the oldest models of community residential living. Although up to eight people may live in a group home, five or fewer people share most homes. In most cases, the group home staff works shifts to provide support throughout the time consumers are at home (typically 18 hours on weekdays and 24 hours on weekends and holidays). Training and assistance is provided to meet the needs identified in each individual person-centered plan.

Day Services programs take place in the community or in workshops and are designed to provide work opportunities as well as maintain skills in post-school years.

• Day programs - are designed to promote the ongoing development and maintenance of skills. The services may be provided in a variety of settings, including natural workplace settings throughout the community or at sheltered sites. Most participants in these programs receive federal funding through the Medicaid program. Care must be taken that the goals and objectives for each individual are not directed at teaching specific job skills. Medicaid will not pay for vocational training that is part of a day training program, though DSPD works closely in coordination with the Utah State Office of Rehabilitation to leverage available federal funding opportunities.

• Supported retirement - is designed for people who are age 55 or older or whose health prevents their continued participation in employment or day training. This program utilizes senior citizen centers, adult day centers, or other community programs that provide a variety of activities for seniors.

Supported Employment programs place people with disabilities in jobs in regular work environments. A job coach is assigned for each person to provide on-the-job training and to help solve problems that may arise. The cost of supported employment is $29.09 per job coach hour. In some cases, individuals are able to reduce the need for a job coach and may eventually handle a job on their own. For most individuals who enter this service, the Utah State Office of Rehabilitation in the State Office of Education funds the first 170 hours of training and the Division of Services for People with Disabilities provides the ongoing funding.

Family Support provides services to families that enable them to care for their children with disabilities at home. These services are provided through contract providers or by staff hired directly by parents. The individualized nature of the program does not allow for fixed rates or funding allocations. The annual average expenditure per consumer is about $6,303.

Transportation Services helps people with disabilities in getting from their homes to day programs, jobs, and other activities. The need for transportation assistance and the cost of transporting people is one of the most frequently mentioned issues when public hearings are held on services for people with disabilities. This is especially true in the rural areas of the state.

Funding Detail

The division has statutory authority to not lapse funds at the end of a fiscal year and will typically have some amount of Beginning Nonlapsing balance available. The statute restricts use of nonlapsing funds for one-time purposes unless authorized by the Legislature.

Program: Acquired Brain Injury Waiver

Function

The Acquired Brain Injury Home and Community-based Services Waiver is for people who have a documented brain injury, are 18 years of age or older, and require the level of care provided in a nursing facility. The waiver allows the use of Medicaid funds outside of institutional settings. Services provided under this waiver include:

• Case Management: Assists people in gaining access to needed services
• Respite Care Services: Gives regular caregivers short-term relief
• Supported Employment: Pays wages for a job coach for persons who require assistance on the job
• Specialized Medical Equipment: Includes special equipment designed to assist with mobility and communication
• Chore Services: Assists in keeping a home or apartment clean, sanitary, and safe
• Emergency Response System: Provides a device that lets high-risk individuals call for help in cases of emergency
• Companion Services: Offers non-medical care, supervision, and social activities given to adults who have a difficult time functioning
• Family Training: Provides training and counseling services to families to assist with the care of the person receiving waiver services
• Structured Day Programs: Offers supervised activities to help maintain independence
• Residential Habilitative Supports: Provides intensive to intermittent residential services in host homes, supervised apartments, and supported living

Funding Detail

Program: Physical Disabilities Waiver

Function

The Physical Disabilities Home and Community-based Services Waiver is also a Medicaid waiver program allowing the use of Medicaid funds outside of the standard institutional setting. The Physical Disabilities Waiver provides monthly expenditure allocations between $255 and $2,675 to people with severe physical disabilities involving the loss of the use of two or more limbs that are able to live independently with the aid of a personal attendant. Without this assistance, they would likely be in a nursing home. Each service plan is based on the level of care required by the person. The person is responsible for hiring, training, and supervising the attendant. An intermediate organization handles payment and other payroll functions necessary in connection with individuals hired by service recipients.

Funding Detail

Program: Non-waiver Services

Function

Non-waiver Services includes services provided to individuals who are not eligible for any of the Medicaid waivers due to either income and asset issues or the nature of the disability. Non-waiver Services also includes non-Medicaid eligible services provided to individuals in the waiver program, such as psychological assessments used to determine eligibility, residential start-up costs, housing assistance, and special needs funding. These expenditures do not draw down matching Medicaid funds.

Efforts to Limit Expenditures in this Service Category

There has been a concerted effort to qualify and move individuals from this state-funded-only program over to the Medicaid waiver program. Since 1999, over 732 individuals have moved from non-waiver to waiver (Medicaid) funding. In FY 2012, there were 103 people remaining in this program. Some individuals receiving services under this program would qualify for Medicaid but refuse to either apply for Medicaid or spend down their income and assets in order to qualify. These individuals have had their service funding reduced to a commensurate level that the state would provide under the waiver program. Individuals who do not meet the waiver level of care requirements must submit a Graduated Fee Assessment Form to the division.

Funding Detail

The state portion was reduced during the 2008 Second Special Session of the Legislature.