APPENDIX B: CORE SUPPORTS

II. Personal Supports

Overview

To maintain their dignity and ensure their personal health and safety, Albertans with disabilities need to know that they will have the personal supports they require. All Albertans have the right to be known and respected for their abilities. For persons with disabilities, the first step towards achieving this goal is to ensure that supports are in place to provide for the basic needs of the individual. Not until basics such as food, shelter, daily living requirements, safety/security, etc. are ensured can Albertans realistically start to develop their abilities, integrate into and participate in society.

Personal supports refer to a range of goods and services, technical aids and equipment, personal services and brokerage that offset the effects of a disabling condition. Personal supports are also known as disability supports. Disability supports refer to technical aids and personal services required by many Albertans to get to school, to participate in their community and workplace, to reside in a community, and to participate in their choice of recreational activities. These supports assist persons with disabilities to, for example, enjoy a standard of life comparable to non-disabled citizens.

Several provincial and federal government ministries are involved in providing personal supports but they are largely uncoordinated, often inadequate and cumbersome to access. To address this issue, the federal, provincial and territorial governments through In Unison and the Social Policy Framework made commitments to improve collaboration by working towards:

• Improving access to disability supports.
• Enhancing the portability of these supports.
• Helping to offset the cost of the supports.
• Separating access to supports from eligibility for income and other programs.
• Ensuring that work-related supports are available.

These commitments have not yet resulted in any significant improvements in services to individuals.

Context of Personal Supports in Alberta

There are four elements of personal supports for persons with disabilities:

• Personal care services.
• Technical aids, assistive devices and equipment.
• Transportation.
• Housing.

Depending on the type and severity of impairment, individuals with disabilities may require one or more elements of disability supports. Albertans with disabilities may access personal supports from regional authorities and/or governments (provincial and municipal).

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Personal Supports in Alberta for Persons with Disabilities

Personal Care Services

Some individuals may require personal care services for a wide range of needs – meal preparation, personal hygiene, medical care, respite, house maintenance, etc.. Without personal care services, some persons with disabilities would be required to reside in formal care environments such as hospitals or institutions. In Alberta there are three authorities that administer personal care services: Regional Health Authorities, Persons with Developmental Disabilities (PDD) Boards, and Regional Child and Family Service Authorities.

Home Care Program

There are 17 Regional Health Authorities that administer home care services to Albertans. The home care program is designed to aid persons who have just left the hospital and require short-term support, persons with long-term physical limitations who can reside in the community with the assistance of disability supports, and persons with terminal illnesses who choose to remain in their homes for as long as possible. Funding for home care services varies among authorities with an intended maximum support of $3,000 per month.

In the Premier’s Council on the Status of Persons with Disabilities review of the program, there were a number of issues that were identified by service providers and users. Some of these include lack of portability of personal care services across Regional Health Authorities and inconsistency of available home care supports within and across Regional Health Authorities.

These issues create frustration and crisis amongst persons with disabilities and their families. The absence of coordination and consistency of services has compounded users’ suspicion of the program’s intent to promote independent living in communities.

Persons with Developmental Disabilities Program

Services to support adults with developmental disabilities and their families/guardians are administered and delivered through the Persons with Developmental Disabilities Provincial Board’s six Regional Boards. The Persons with Developmental Disabilities Program provides a range of disability supports such as direct service and community living supports (i.e. roommates, home support, respite care).

A primary mandate of the program is promoting the inclusion of persons with disabilities in community life. The program centres its individual supports on the following principles:

• Supports must assist a person to be fully included in community life in the roles he/she has chosen.
• Supports must be determined based on individual needs in the context of local community and family.
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Resources to Children with Disabilities

There are 18 regional child and family service authorities in Alberta that administer the Resources to Children with Disabilities Program (RCDP). Children with disabilities who are under 18 years of age, reside in the custody of their parents, and are living in Alberta are eligible for funding from the RCDP to cover the extraordinary costs associated with their disability. The program also provides information to parents/support persons about personal support services available in the community. The concept of “extraordinary costs associated with disability” is defined in the RCDP as those expenses that are above and beyond costs normally associated with providing for and caring for a child and incurred due to the nature and severity of the child’s disability.

Parents of children with disabilities do not have to complete a means test prior to applying for the program. However, the program does assume that parents/support persons have available resources to pay for their child’s personal supports in advance and then submit receipts to the program for reimbursement. The RCDP’s policy of reimbursement of personal supports does not support families with low-income status because they are not in a financial position to wait for reimbursement without jeopardizing other financial commitments.

Depending on the severity of the child’s disability and the availability of resources in the child’s community, the RCDP will aid the parent/caregiver with transition planning from children’s services to adult-based services (e.g. AISH, PDD, Alberta Mental Health etc.). In a program review by the Premier’s Council of the RCDP, service providers and users identified a number of barriers to parents/support persons accessing funding. For example, funding is based on child’s needs but eligibility is based on medical diagnosis.

Overall, parents/support persons reported to be satisfied with the RCDP. However, they also expressed a feeling that children in care of the child welfare system had greater access to personal supports and medical care than their children. The issue of local custodianship was cited as a major concern by parents accessing the program.

Technical Aids, Assistive Devices and Equipment

Persons with disabilities have cited technical and adaptive aids as essential tools for many Albertans to fully participate in their living, learning, working and recreational environments. In Alberta, adaptive aids and assistive devices may be provided to individuals with disabilities by the various school boards, Ministry of Learning and the 18 Regional Health Authorities and school boards.

Aids to Daily Living Program

Similar to the Home Care Program, the Aids to Daily Living Program is administered by the Regional Health Authorities. The personal supports provided by the Aids to Daily Living Program consist of “basic equipment and supplies for more independent functioning in the person’s home or in a home-like setting”. In order to access personal supports from this program, Albertans must:

• Show proof of chronic disability or illness, long-term disability (more than six months), or terminal illness.
• Be an Alberta resident for a minimum of six months.
• Possess Alberta Health Care Coverage.

Albertans with disabilities who are receiving financial support through the Worker’s Compensation Board, Veteran Affairs Act, Motor Vehicle Claims/Criminal Injuries Compensation, or the Medical Services Branch are considered to have sufficient coverage and are not eligible for personal supports from this program.

The Aids to Daily Living Program has a cost sharing agreement with users where the user is responsible for 25% of services and equipment per fiscal year up to a total of $500, unless users can show receipt of AISH or SFI benefits, Alberta Widows’ Pension, Premium Assistance Plan or show proof of low income status. This program has a designated list of approved personal supports. There is no option for users who wish to purchase personal supports that are not on the program’s approved list. This agreement devastates some individuals financially and often means such individuals go without a needed item or service.

Some of the limitations identified in a review by the Premier’s Council of the Aids to Daily Living program include limited appeal scope and no option for individualized funding.

Transportation and Housing

There are limited options for Albertans with disabilities to obtain accessible and affordable housing or transportation in their communities. In Alberta social housing units are not identified by their degree of accessibility. Various community organizations have provided anecdotal evidence of a wait list for accessible housing. Albertans with disabilities who own property have opportunities to access funding for renovations to their existing property. However, these funding programs are based on an individual’s income and the market value of their property. Consequently, persons just above the low-income status - market basket or low-income cut-off – are usually not be eligible for support.

Personal supports issues related to housing issues include the lack of accessible housing units in Alberta, renovation grants for improving the accessibility of existing private and public buildings, and disability tax credits for improving the accessibility of private buildings.

Accessible transportation options vary across Alberta. Albertans who reside in urban areas tend to use more public transportation services than their peers residing in urban communities. An on-going concern cited by persons with disabilities is the lack of flexibility of transportation programs to accommodate the needs of Albertans with disabilities. Personal supports issues related to transportation needs include grants for accessible transportation in communities (Unconditional Municipal Grant Program), cost supplements for public transportation options, and disability tax credits for private transportation options.

Unconditional Municipal Grant Program

In 1993, the Unconditional Municipal Grant Program (UMGP) was created by Alberta Municipal Affairs to replace five grants: Police Assistance Grant, Public Transit Operating Assistance Grant, Urban Parks Operating Grant, Municipal Assistance Grant, and the Family and Community Support Services Program. In 1994, Alberta Municipal Affairs phased out the Municipal Assistance Grant and Alberta Children’s Services assumed responsibility for the Community Support Services Program.

The UMGP is administered by each of the eligible 319 municipalities in Alberta to assist with paying for parks, public transit, police assistance, and accessibility (transportation and buildings).

Municipalities that were incorporated prior to 1993 are eligible to receive the UMGP each year based on an amount of $3.19 per capita. The per capita rate is based on 1993 census records. Certain municipalities receive extra funding if they have a formal transit system or where they have identified themselves to government as piloting a formal transit system. The UMGP does not designate or divide the funding among the designated areas. The UMGP does not have any accountability mechanism to reflect that dollars designated for the grant are dollars allocated in those areas.

A Need for Personal Supports Amongst Albertans with Disabilities

In 1991, the last time a major census of persons with disabilities was done, Albertans with disabilities required almost 170,000 technical supports. The number of individuals involved in receiving supports was somewhat less, given that some persons required more than one personal support. The use of personal supports identifying personal assistants was significantly higher than the other categories of support.

Alberta has long recognized that the right to participate also implies a right to access personal supports needed to overcome a barrier related to having a disability. Consequently, several different ministries offer a wide variety of programs that aid individuals with disabilities living, learning, and working in their communities.

Challenges Associated with Obtaining and Maintaining Personal Supports

There is no study that conclusively identifies the costs associated with personal supports. However, there is qualitative research that identifies frameworks for estimating these costs. Included in these frameworks is an identification of those disability supports that are funded by governments and/or individuals with disabilities and their families.

The issue of who is responsible for the cost of personal supports is an ongoing and contentious debate between all three levels of government and persons with disabilities. Some governments argue that the cost of disability supports is the responsibility of individuals with disabilities and their family, unless these individuals do not have the resources. Where individuals with disabilities are unable to finance the prescribed supports then governments should fund only medically required supports.

Persons with disabilities argue that disability supports are expensive and are not incurred by non-disabled persons. Disability related costs tend to place some Albertans and their support persons at a financial disadvantage and may promote reliance on government supports for non-disability supports to cover the basic cost of living. Consequently, disability supports must be funded by governments to relieve financial stress on families/support persons, encourage full participation in the community, to facilitate participation in the marketplace, and to create an inclusive environment that promotes equity of opportunity across lifespan.

Outcomes and Strategies

Specific Outcomes

1. Affordable technical and personal supports for independent community living is available at home, school, work and play.
2. All Albertans will have choices and the right to determine the type of support required; where and how that support is provided.
3. The Alberta government and municipalities provide funding for housing and transportation that meet the needs of persons with disabilities.
4. Families and others receive the support and funding they need to provide effective and appropriate care for persons with disabilities.

Visionary Outcome

Albertans with disabilities will receive the support they require to independently function with dignity at home, school or work.

Short-term Strategies

Strategy 1: Enhanced Community Supports Model.

The government of Alberta must take a more proactive stance in fulfilling its responsibilities for developing, organizing, funding and coordinating programs for persons with disabilities. There is a pressing need for better coordination and for a more comprehensive approach in this area.

The 1990 Premier’s Council Action Plan recommended an enhanced Community Supports model, and the Council is again calling for the implementation of this model. A Community Supports model would provide individualized funding through a single, province-wide program that integrates all current disability support programs under one philosophy and one set of criteria. This model would apply to persons with all disabilities and to all provincial government ministries along with their regional authorities.

The model would address the need for persons with disabilities to independently make decisions about their individual needs and whom can best provide them, and have guarantees that their safety/security needs will be met.

It is proposed that a committee to support this direction be established with representation from persons with disabilities, their advocates and government. The committee would discuss and develop interdepartmental policies and procedures for the development of:

• A holistic approach for providing programs and services for people with all disabilities.
• An individualized funding model for persons with all disabilities.
• A format for implementing a service plan tailored to the individual’s needs.
• An objective independent brokerage approach to develop and ensure accountability to a person’s plan.

Those who are involved in creating the enhanced Community Supports model will need to consider:

• Equity issues coming out of the Persons with Developmental Disabilities Governance Act. Currently, higher levels of service are being provided to a segment of the disabled population.
• The realities of regionalization and cultural diversity.
• The importance of individualized funding and choice.
• The level of service that ensures that an individuals’ basic safety/security needs are met.
• How personal support needs overarch other needs that are required to achieve full citizenship.

Strategy 2: Individualized Funding

Individualized funding is tailored to individual need and managed according to the individual user’s preferences and priorities (i.e. price, schedule, location, quality). This approach would respond to gaps or inadequacies in existing service arrangements and would encourage the individual and the community to plan and to be accountable.

Individualized funding could be applied directly to the individual and/or family for a number of needs. For example, respite services for the individual and his or her support network or personal support at school, at work, at home or socially.

Recommended Strategies

General/Systemic

44. Develop strategies for linking existing disability support programs through an enhanced Community Supports model (one-stop shopping).
45. Index individualized funding to reflect inflation and the real cost of living with a disability, including the costs associated with specialized devices and services, medications, special nutritional requirements and living in a rural/remote community.

User Control and Choice

46. Ensure that the allocation of supports is flexible and responsive to individual needs rather than by arbitrary regulations that categorize people with different disabilities.
47. Provide supports in accordance with the individual’s personal, informed choice (rehabilitation plan, educational and career objectives, etc.)
48. Evaluate support services to ensure minimal intrusion into the individual’s life in the assessment, planning and delivery of supports.
49. Provide equitable safety/security needs to persons with disabilities, regardless of where they live.

Transitions

50. Encourage Alberta Children’s Services and Alberta Human Resources and Employment to jointly monitor Children’s Services’ caseloads in order to provide seamless transitions from Children’s Services into adult services.
51. Improve transitions in all adult support services such as AISH, Supports for Independence, Canada Pension Plan-Disability and Student Financing for Students with Disabilities.

Portability

52. Develop regulations and standards of service that coordinate and improve the consistency of support services across regions.
53. Provide individual users with an entitlement card that removes the need for new assessments when a person moves from one region or office to another.
54. Make the interpretation of policies and programs related to safety/security needs more consistent within regional health authorities and key provincial government ministries.
55. Review current government funding models, i.e. Services to Children with Disabilities, to determine the best way of meeting the needs of persons with disabilities of ALL ages.

Aids to Daily Living

56. Expand Aids to Daily Living programs to include equipment related to employment and education at all levels (e.g. voice-activated computers).
57. Include broader representation from persons with disabilities and their advocates in current and future reviews of Alberta Aids to Daily Living.
58. Include a user satisfaction survey in current and future reviews of the administration and delivery of Aids to Daily Living programs conducted by Alberta Health and Wellness.
59. Structure Aids to Daily Living programs so that the user decides what goods and services are required and where they are purchased.

Home Care and Personal Care Support

60. Set standards for training programs for home support workers and offer incentives to attract more workers to the field.
61. Provide special funding within home care for persons with long-term disabilities. Separate the funding program into two streams: those who require services for more than one year and those who require services for less than one year.
62. Develop a comprehensive assessment tool for home care and personal care support, to increase collaboration and coordination between government and voluntary agencies regarding assessments for home care.
63. Give care recipients and families access to an independent assessment if they disagree with the health authority’s assessment of their care needs to live independently in the community. Establish an arbitration or appeal mechanism for use when the two assessments disagree.
64. Make use of assessments that have already been done, to reduce intrusiveness and enhance portability.
65. Expand the roles and responsibilities of Personal Care Attendants beyond the provision of basic needs. Attendants could help to complete forms and help access the full range of community opportunities that are available to the average citizen.
66. Establish portability between regions. This is not currently available within the home care structure.
67. Conduct a salary review for staff and personal care staff working in community home care, assistive and continuing care centres and community group homes.
68. Establish self-managed care as a choice in assistive care centres to support existing staffing structures.
69. Increase the dollars for self-managed care to reflect inflation and local economies.

Respite Support

70. Expand the recommendations of the Long-Term Care Review Policy Advisory Committee’s Healthy Aging: New Directions for Care final report to include persons with disabilities of all ages.
71. Review all community-based personal support programs to determine whether respite support is appropriate and adequate.
72. Provide respite support funding on an individualized funding model to allow for flexibility, personal control and local investment in a range of appropriate care opportunities or models. (See the Services to Children with Disabilities model, which includes funding for respite care.)
73. Introduce a new coordinated access process to assess needs and ensure appropriate referrals to the full range of continuing care services, whether those services are provided at home, in supportive living arrangements or in continuing care centres.
74. Establish healthy aging as a priority for government, including a greater emphasis on promoting healthy lifestyles, preventing illness and injury, and empowering and engaging seniors and persons with disabilities of all ages.
75. Shift the focus so that the first priority is for people to remain in their homes and other types of supportive living arrangements.
76. Enhance access to information on respite options and services. Ideally, this service will be coordinated through the offices of the proposed enhanced Community Supports program. A coordinated booking or intake system would facilitate one-stop service for the caregiver.
77. Expand training opportunities for those involved in the informal respite system (e.g. privately contracted or unpaid support, and social/recreational programs).
78. Review the formal respite capacity of assistive care centres and community services.
79. Where individualized funding is not provided for, establish mechanisms for formal providers of respite services to bill the funder directly once the individual or family requiring respite care has been approved for funding.
80. Through a partnership among Children’s Services Authorities, Persons with Developmental Disabilities and regional health authorities, develop a joint strategy for providing respite funding, services and support to individuals and families.

Services to Children with Disabilities

81. Broaden eligibility for Services to Children with Disabilities to include all children with disabilities that are identified as having “extra costs associated with their disability.”
82. Provide parents/guardians with a Services to Children with Disabilities benefits card that allows them to access a pre-approved amount of service, supports, assistive devices or adaptive technology and that facilitates a direct billing between the service provider and the Alberta government. Out-of-pocket expenses place unnecessary hardship on families and increase the paper work for Services to Children with Disabilities staff.
83. Include members of the extended family and other informal care providers in Services to Children with Disabilities funding for respite services.
84. Strengthen partnerships between Services to Children with Disabilities and home care for children in order to deliver collaborative services and supports.

Housing

85. Expand the eligibility criteria for the Home Adaptation Program to include all persons with disabilities.
86. Disassociate eligibility for the Home Adaptation Program from the income of the person with a disability, their family or caregiver.
87. Revise the Alberta Community Development business plan to include performance measures of the availability of accessible and affordable housing in Alberta communities, with a monitoring process.
88. Re-establish the provincial co-op housing program, which had an excellent track record of meeting the needs of persons with disabilities.
89. Research and develop an independent funding scheme for subsidized housing for persons with disabilities who are currently in their own home or in a rental property.
90. Support the tri-level homelessness initiative (federal/provincial/municipal), which is looking at options to expand shelter and permanent housing options.
91. Plan accessible housing in concert with support services (e.g. safety/security and growth needs).
92. Have all levels of governments work together to establish programs and services to:
• Help developers with capital and operational funding.
• Develop public education to dispel the “not in my backyard” syndrome.
• Provide monies directly to a qualified individual to purchase the required materials, manpower and services to ensure their place of residence is accessible.
93. Create incentives for developers to build accessible and affordable housing that adheres to the Building Code requirements related to disabilities.
94. Give priority to persons with disabilities in subsidized housing projects.
95. Increase the funding for the rent supplement program.