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Checklist for Planning A Move of an Older Adult to an Alternative Living Arrangement

It is important to establish and maintain a transition planning process with the home before, during and after the move. The following checklist provides a guide to transition planning meetings with the provider of the alternative home whether it is a long term care (LTC) or retirement home or supported seniors’ apartment.

Get Ready

  • Identify the participants and ensure they are available to support the transition planning process; participants may include: Supervisor and/or Manager, Primary Support Worker– Residential and Day Program, Family members, Community Care Access Centre (CCAC) Coordinator, other involved services, Director of Care from the LTC home and other appropriate individuals from the home or long term care facility.
  • Set a schedule for meetings in advance, if possible, so everyone can reserve these dates in their respective schedules.

Set the Agenda

The points of discussion for a transition meeting or series of meetings will vary with the needs of the individual and the paid and unpaid caregivers involved in the process. The checklist below provides a picture of many possible items that should be discussed at some point during the transition planning meetings.

Background Information on the Person

  • History of the individual, the factors that led to the decision to seek alternative residential or LTC placement, his/her current needs, strengths and wishes.
  • History of the involvement of the family – some families have been very involved in the support of their son or daughter throughout their life, others have not; in the case of the Public Guardian Trustee (PGT) as the decision-maker, ensure early involvement of the PGT staff and identify the nature of the relationship of Developmental Service agency staff to the client in the absence of family.

The Individual’s Current Living and Support Situation

  • Living Independently
  • Living at home with his/her family
  • Supportive Housing
  • Supported by a Developmental Service Agency (DS agency)

Current Provider Name (if applicable)

Address

Telephone number:

E-mail address:

Key contacts at current providing agency:
Supervisor and/or Manager & Contact Number:

Primary Support Worker & Contact Number:

Other supports the person is receiving:
CCAC—supports provided via CCAC

Day Program – (provider name)

Therapeutic

Medical

The Individual’s Support Needs

  • Review the individualized supports needed for this individual and how these will be put in place during transition and after the move to the new residential placement.
  • Determine how existing social relationships will be maintained.
  • Confirm staffing during and after transition in the LTC home – identify the role and responsibilities of the staff from the DS agency when they are supporting the individual living in the LTC home.
  • Confirm the plans of the DS agency for long-term contact with the client – e.g. ongoing visits by the staff and the individual’s friends.
  • Supports that need to be put in place while the individual is waiting to move (via the CCAC or other sources).

Orientation

  • Arrange for pre-move visits to the home by the family, individual and DS agency staff.
  • Arrange pre-move visits by the home staff to the group home.
  • Schedule pre-move visits by the individual. This may be gradual beginning with day visits and extending to overnight.
  • In the case of a move to a long term care home investigate possible use of respite services for overnight stays.

Cross Sector Information Exchange

  • How the DS agency staff will train and provide information about the individual to the staff at the LTC home (this may need to be provided in different formats and on several occasions for different shifts of staff – this may also be needed to be repeated when necessary).
  • Provide other information that may be needed to the LTC home such as psychological and medical reports.
  • Consider how financial management has occurred in the past and how it may have to be adapted to the current living situation. (in many cases, the DS agency has managed the individual’s finances; some families may wish the LTC home to take over this responsibility)

Moving In

  • Identify what the individual should bring to the new home and what items need to be purchased ahead of time.
  • Schedule the time and date of the move.
  • Arrange for support to the individual during the move both at the old and new locations.

Developing Partnerships Between the DS Service Provider and Family

  • Visits, activities, outings.
  • Participation in case conferences and other meetings.
  • Ongoing communication processes / protocols among the family, DS agency and residential provider.
  • Involvement in decision-making regarding the support plan.
  • Participation in the resolution of issues and challenges – being part of the problem-solving team – offering possible resources.
  • Supporting family in finding out about and joining the family council or other participatory processes within the residential setting.

Developing Partnerships With the Residential Provider

  • Establish and maintain ongoing communication with the family and the new residential provider.
  • Inform and involve family and DS agency in significant events such as: case conferences, plan of care meetings, decisions regarding the support/care of the individual.
  • Orient DS agency staff and family to the home.
  • If DS agency staff are working in the home during transition or ongoing – orient and train staff about the routine, activities and any necessary policies and procedures.

Identifying Key Contacts in the New Home and With Other Providers Involved in the Support Plan

It is important to keep in close touch with other players in the person’s transition plan and ongoing support. Keeping a contact list of all the players and sharing it with everyone involved can facilitate smooth communication.

Residential Provider

Administrator:

Name

Contact Numbers:

E-mail:

Director of Care:

Name

Contact Numbers:

E-mail:

Other: ______________

Name

Contact Numbers:

E-mail:

Developmental Service Agency

Executive Director:

Name

Contact Numbers:

E-mail:

Program Director:

Name

Contact Numbers:

E-mail:

Other: ______________

Name

Contact Numbers:

E-mail:

Family

Parents:

Name:

Contact Numbers:

E-mail:

Siblings:

Name

Contact Numbers:

E-mail:

Other: _________________

Name

Contact Numbers:

E-mail:

Sourced from “Transition Guide For Caregivers”, The Ontario Partnership on Aging and Developmental Disabilities http://www.opadd.on.ca

Transition Planning to Older Adulthood

There are many transitions in life. This Guide focuses on the transition to older adulthood for people with developmental disabilities. It is important to keep in mind that transition to older adulthood is not merely about accessing a variety of programs available to senior citizens. It is above all a planned and conscious evolution to embrace life as it presents itself during the aging process.

The Life Plan or Person Directed Plan

The Life Plan or Person Directed Plan of the individual provides the basis for the support provided by members of the support circle. As the person enters older adulthood, the life plan changes to include consideration of emerging issues and needs related to aging. Transition planning is not about replacing the Life Plan but provides a framework for thinking about and adjusting the Life Plan as the person ages.

The Role of the Individual in the Planning Process

The Task Group considered the role of the person with a developmental disability in the transition planning process. The person centred approach to planning requires that the individual be the source of information about their own life plan. The realization of this principle may be influenced by the person’s capacity to become involved and to make his/her needs known. Where there are limitations on capacity caregivers must rely on more on their personal knowledge of the individual. In all cases, the communications of the client however they may be expressed, are relied on to inform planning decisions.

Definition of Transition Planning

The Transition Task Group developed a definition of Transition Planning to Older Adulthood to help caregivers in their planning work. The definition can help to put all caregivers on the same page in their understanding of the transition planning process.

Transition Planning is a planned process that:

  • Supports the individual in maintaining quality of life as he/she ages.
  • Allows the individual to be the driving force in shaping the plan and to be involved in all plan-making to the extent of his/her capacity.
  • Helps the person with developmental disabilities to plan for changes in their support needs as they age (aging is not necessarily related to a chronological age such as 65).
  • May involve changes in how the family provides support or in the amount of support provided.
  • May include access to day supports for older adults such as Meals on Wheels or a senior’s day program, so the person can remain at home, and / or
  • May involve preparing for a move to a new residential setting where more appropriate support can be provided.
  • Always includes the person with a developmental disability.

And may include a variety of people and organizations such as:

  1. The family, guardian or advocate.
  2. Friends of the individual.
  3. Direct care staff of a developmental services agency and / or older adult services agency.
  4. Facilitators and members of support circles.
  5. A case resolution coordinator.
  6. A medical practitioner and / or psychiatrist and / or psychologist.
  7. Coordinating bodies such as the local Community Care Access Centre.
  8. The Ministry of Children, Community and Social Services developmental services coordinated access process.

Checklist for Transition Planning

How comfortable are you and your planning group with the idea of Transition Planning?

  • There is a clear idea of the transition planning process that all members of the support circle share.
  • The group needs to meet to develop a common understanding of transition planning.
  • We need more information about transition planning.

Getting Ready

The most important thing in supporting the individual and planning with them for their transition to older adulthood is to start early. It is very important to conduct an assessment prior to the onset of any aging symptoms. The results of this first assessment serve as a baseline and provide a point of reference for any changes that come later. There is no specific age to take a baseline assessment but the sooner the better. It is recommended that an assessment be done by the time the person reaches 40. However due to the prevalence of Alzheimer Disease among people with Down Syndrome and the tendency for its symptoms to show up earlier among this population group, in such a case a baseline assessment may be best done in the person’s early 30’s. Baseline assessments can include standardized tests conducted by professionals and baseline information can be kept in a life book that tracks changes with the person over time.

Checklist for Getting Ready

  • Identify the age of the individual when you feel it would be best to begin planning _______.
  • Gather and maintain history and background information on the individual.
  • Create baseline data on the person prior to his/her entry into the years when the aging process accelerates.
  • Acquire new skill sets related to support, intervention, health and emotional conditions associated with aging.
  • Develop capacity to talk with physicians, specialists and other health practitioners and to keep a record of their diagnoses and treatments.
  • Become aware of the full range of services available to older adults and how to access them.
  • Get to know the contact people at the CCAC and all seniors programs/services; visit these programs to become familiar with what they offer.
  • Develop transition planning that encompasses the full range of the aging experience – physical, emotional, employment, decision-making.
  • In the transition planning process, consider the impact that aging has on all other people in the client’s life (staff, roommates, friends, family) and how this may influence planning decisions.
  • Ensure the individual’s plan includes clearly identified risk factors arising from family history, the presence of a syndrome, living situation and lifestyle.

Keeping A History

Because of the complexity of the aging process for people with developmental disabilities and the presence of different care givers and agencies in their lives over time, it is important to create and maintain a clear history. The history may include information about the birth, health conditions during childhood and the family history of illness that may predispose the individual to certain conditions (for example, diabetes or heart conditions). In many cases these records may be with the family or family physician. However it is important to assemble them in such a way that they are available to future potential caregivers in the event that a current caregiver is unable to continue in the care giving role.

Checklist for Creating a History

This checklist provides some guidance to thinking about the kinds of things that may be important to put into the history and where the items may be obtained.

  • Birth history
  • Family history
  • Childhood illnesses
  • Psychomotor assessments
  • Psychological testing
  • School assessments and reports
  • Support agency assessments and reports
  • Physician visits
  • Specialist visits
  • Immunizations
  • X-rays
  • Vision Check-ups
  • Hearing Tests
  • Dental Check-ups
  • Special health conditions and needs
  • Other ________________

Principles for Transition Planning

Support circles allow family, friends, neighbours and paid caregivers to work together in helping the individual realize his/her life plan. Transition planning to older adulthood may introduce new issues and additional caregivers from the long term care sector into this equation. The Transition Task Group believes that support circles can be helped in their work by adopting principles to guide their interactions and decision-making. Your circle may have developed its own guidelines or philosophy. However the Task Group found the following set of principles helpful to think through the issues that arise with aging and to provide a point of reference when new members enter the circle.

These principles were developed by the Huron Trillium Partnership. The partnership was formed by developmental service and long term care providers as well as coordinating and planning bodies in Huron County. They created the principles as a result of their transition planning experience with older adults who have developmental disabilities. They are provided here to help you think about some of the key aspects of transition planning.

  1. Respect for the Individual
    Each person is unique in his or her abilities, preferences, emotional nature, physical characteristics and learning. Transition Planning should respect the dignity of the supported individual and ensure that plans reflect their needs and aspirations. Moreover plans should support the rights of each individual under the Canadian
    Constitution, the Ontario Human Rights Code, the Ontarians with Disabilities Act and other government
    legislation.
  2. Family Involvement
    The relationships that each person may have with members of his/her family are to be encouraged and respected. Transition Planning should always allow for the inclusion of family or other significant people in the individual’s life and in the Transition Planning Process.
  3. Continuity of the Life Plan
    Transition Planning is not a substitute for life planning but an integral part of it. Transition Plans should consider how to uphold the person’s pre-existing life plans and be attentive to the whole person.
  4. Respect for All Relationships
    People vary in their capacity to form relationships and to engage in the many aspects of relationship-building.
    Transition Planning should allow each person to form and to enjoy relationships with others, both persons with and
    persons without an intellectual disability.
  5. Valuable Community Involvement
    Transition Planning should consider every aspect of community life:

    • Social relationships
    • Recreation, education, employment, self-improvement groups, leisure activities
    • Participation in a worship community
    • Citizenship roles such as voting, participation in political processes, access to elected representatives and involvement in civic affairs.
  6. Balance of Risk with Safety
    The pursuit of goals in life is often accompanied by risk. Transition Planning should allow for risk while ensuring the person does not put themselves in danger.
  7. Communication
    Persons with a developmental disability may have different ways of communicating with others. This may include eye contact, sounds, motions, phrases and complete sentences. Transition Planning must include careful listening to each message in whatever format it is offered. In this way respect may be assured for the dignity and wishes of the person. Moreover, it is important to inform new caregivers who become part of the person’s support system about their unique communication methods and messages.

Sourced from “Transition Guide For Caregivers”, The Ontario Partnership on Aging and Developmental Disabilities http://www.opadd.on.ca

Aging with A Developmental Disability – The Role of the Family

Families are the principle care giver for most people with developmental disabilities. Often families share this care-giving role with a service provider such as a developmental service agency. The transitions that occur during the aging process may require changes in the care-giving support provided by various family members and these agencies. It is important that each family have a sense of which family members are available to share in the support and how this family support may change over time. These changes may be brought on by new needs of the person being supported, by the aging of care-giving family members and by changes in circumstances of the family.

Checklist on the Role of the Family

Who are principle care-giving family members now and how much support does each provide?

  • Mother
  • Father
  • Sister
  • Brother
  • Aunt
  • Uncle
  • Cousin
  • Other Relations

What circumstances might impact the ability of family members to continue to provide support?

  • New job
  • Moving away
  • Health conditions
  • Lack of respite
  • Need for vacation
  • Retirement
  • Reduction in income
  • Other

Sourced from “Transition Guide For Caregivers”, The Ontario Partnership on Aging and Developmental Disabilities http://www.opadd.on.ca

The Community Development Wheel

How to Develop Services in Your Community

  • From an idea comes the vision: “That People will no longer have to leave our communities to receive supports and services”.
  • Knowledge is required to understand the needs of individuals with a developmental handicap, and what services and supports are there for them.
  • What is a developmental handicap? The Developmental Services Act defines developmental handicap as: “a condition of mental impairment present or occurring in a person’s formative years that is associated with limitations in adaptive behaviour”.
  • Take action, organize get together with family, friends, health and social service providers who have ideas on how to provide support and services to developmentally challenged adults. Identify issues, and develop an action plan on how to address issues. Set up a working committee to determine how the organization will look like, and to prepare terms of reference for the accountability structure.
  • Arranging meetings, ensuring that provincial delegates, Ministry of Children, Community and Social Services, Developmental Services Branch, and delegates from the Chief and Council to discuss plans are included. It is very important that you include the provincial delegates at the beginning of your discussion, so that they will be aware of your intentions to provide services.
  • Meet with the Chief and Council to inform them of your intentions of looking into the possibility of secure First Nation based support and services. Ask for a Band Council Resolution supporting your idea.
  • Set up an accountability structure – committee that will be responsible for the following:
    • Determining needs of individuals;
    • Developing a goal and vision statement;
    • Standards of performance;
    • By-laws, required only if you set up an incorporated board, not really necessary, but obtaining a charitable number would be of benefit for fundraising;
    • Personnel and administrative policy;
    • Program description – day program, residential,respitecare,etc.;
    • Client forms, e.g. Intake forms, referral forms,
    • Preparing proposals; and Arranging meetings, ensuring that provincial delegates, Ministry of Children, Community and Social Services, Developmental Services Branch, and delegates from the Chief and Council to discuss plans are included. It is very important that you include the provincial delegates at the beginning of your discussion, so that they will be aware of your intentions to provide services.
  • Establish linkages with other agencies, and a provincial body to provide support. The provincial body is Community Living Ontario.
  • Complete a feasibility study, to gather data on the number of individuals with a developmental handicap and through partnerships with other First Nations in the area could be developed to make it feasible to have an organization based on a native community.
  • Development of the Proposal and forward to the Ministry of Children, Community and Social Services.
  • Once funding approval has been received, programs and services can become operational and Individual Life Plans completed.

Medicine Wheel Core Teachings


Vision
“From a dream comes a vision” J. Assinawai

OUR VISION IS THAT EVERY INDIVIDUAL ON A FIRST NATION WILL RECEIVE SUPPORT AND SERVICE FROM HIS/HER PEOPLE AND HAVE THE OPPORTUNITY TO RETAIN TRADITIONAL VALUES AND LIFESTYLES TO PROMOTE BALANCE IN HIS/HER LIFE. ALL PEOPLE WILL BE VALUED AS THEY ARE, AND SUPPORTED TO EXERCISE THEIR RIGHTS, INCLUDING THEIR RIGHT TO MAKE CHOICES, DECISIONS, AND PLANS THAT AFFECT ALL ASPECTS OF THEIR LIVES.

A preface to the teachings of the Medicine Wheel

There is a belief that everyone with a developmen- tal disability has access to services and supports. This is true for those individuals who reside near, or in metropolitan areas as well, but, for those in rural and remote areas, this is not the case.

Individuals living in rural and remote areas have difficulty accessing services and supports, mainly because they are not available, but also because there is no organized group available to advocate for those very services and supports. There is also a matter of a lack of fluency in the English language, for some individuals and their family members, living in the northern communities of the province.

The lifestyle/culture in First Nations communities is uniquely different and generally more accommo- dating of people with a difference than non-native communities. To this end many families have kept their children and young adults at home in a variety of situation. Only when the community can no lon- ger accommodate the person, and there is a crisis either in the family or in the community, do outside organizations become involved.

The individuals and communities that receive ser- vices and supports from outside their home commu- nities must often learn to adapt their ways (culture) to fit with the situation that best meet their needs. It is a cultural shock with a relearning of a new cul- ture/language and understanding that must occur.

There are services in some communities which came as a result of family members and health/ social workers advocating for services. Acquiring funding for services is/was not easy, because of the federal responsibility for native communities, and providing services for developmentally disabled individuals is deemed to be a provincial responsi- bility. Provincially funded services to native com- munities are usually cost shared with the federal government as part of the 1965 Welfare Agreement, which is bilateral agreement between the federal and provincial government. The Developmen- tal Services are not included in the 1965 Welfare Agreement, which is why it has been difficult to access funding. Responsibility for the provision of services and supports to individuals with a develop- mental disability belongs to the provincial govern- ment whether, or, not they are residing on a First Nations Community. The provincial government does now provide funding to native communities to provide services and support to developmentally disabled individuals.

This booklet has been developed to ensure that everyone understands their rights, so that individuals with a developmental disability can be cared for by people who understand their culture, beliefs and language. This booklet also includes the Person- Centred Plan (PCP) process which we will call the Individual Life Plan (ILP), as well as suggest a path to follow to set up an advocacy group and accountability structure to access the services and supports that are needed by First Nations people, throughout the province.

All Beginnings Start In The East

Teachings start at the centre, reflecting balance and harmony. The goal is balance with environment, spirituality, self, community and the natural world. Although these core teachings are universal to many First Nations (Aboriginal Peoples), it is recom- mended by the consultant developers that this wheel be recognized only as a guide. Consultation with community, Elders and Spiritual advisors is recom- mended to personalize the wheel to your needs.

Philosophy

In the eyes of the creator, we are all created equal. With this in mind, the programs we deliver will be based on this, and therefore we will treat the participants of our programs with respect, caring and equality.
We will deliver our programs in a holistic manner, always considering the four elements (physical, mental, emotional and spiritual well being), which will work together to create balance in a person’s life. Our organization will deliver programs and services to persons rather than clients, who will be treated in a manner that each of us would like to be treated. We will give participants freedom of choice to live, to grow, and to play in harmony and dignity in the community. – WAACL-JA

CODE OF ETHICS-VALUES

Humility

absence of sense of being superior to clients or employees, valuing individual equality, recognizing that everyone has a place in life; refraining from intimidation to clients and fellow employees.

Honesty

conducting oneself in the community and workplace in a responsible and honourable manner through truthfulness, fairness and sincerity.

Truth

speaking from the heart, and honouring the beliefs of others.

Respect

understand that the circle of life is sacred, that we are all part of creation, showing respect to individual beliefs and tradition, and for one’s own being and that of others.

Bravery

recognizing that other’s views may differ from ours, and honour the difference with the understanding that we are all one people, and have a right to freedom of beliefs and traditions.

Love

unconditional love for each other for who we are, and what we have to offer, with no conditions based on race, creed, or colour, and always looking for the beauty within each person.

Wisdom

using what we have learned in a meaningful way, and using past experiences to promote our growth, and the growth of others, to be kind, good, caring people.

MAKING SERVICES WORK FOR PEOPLE (MSWP)

In 1997, the Ministry of Children, Community and Social Services came out with a new framework to people with developmental services. The new frame- work contained nine goals, and communities were encouraged to focus on initiatives to reach these goals. The following is a synopsis of the document.

  1. Individuals and families throughout Ontario will have access to a consistent range of core services for children and developmental services.
    MCCSS policies relating to MSWP also apply to native people. It is recognized that models for services delivered to native people may be designed differently, but must achieve the same goals of effectiveness. The process/outcomes which emphasize self-reliance, self-administra- tion, and programs and services appropriated to First Nations communities, must be consistent with the Aboriginal Policy Framework.
  2. Those most in need will receive essential supports.
    Residential service is considered essential and is ideally located in the individual’s home community, close to their family. At the present time individuals are taken from their home communities when they are in need of a residence, or when the family can no longer provide care and support.
  3. Families and individuals will receive supports earlier.
    Providing support, such as, respite care or a day program for the individual, will give families strength to care for the individual. A day program would teach basic skills to the individual and would decrease dependency on the family to a certain extent.
  4. Families and individuals will have easier access to services.
    Access to a coordination of services would make services more readily available. Some areas in the province have service coordination that some First Nations people are already linked with.
  5. Families and individuals will receive services that respond to their needs.
    Flexibility in the design of programs make them more adaptable to change, and give indi- viduals and families greater control in the types of services and programs they receive.
  6. Families and individuals will be served by local systems that make the best use of resources.
    Making the best use of resources will enable a community to serve more individuals. Resources does not only mean financial by also community resources.
  7. Local systems will have lower administration costs.
    Spending less on administration will result in more resources going towards program needs.
  8. Families and individuals will receive services that lead to less reliance on government funded services.
    The government encourages cooperation be- tween community groups, such as volunteers, religious institutions, family networks, etc. to decrease reliance.
  9. Families and individuals will receive a coordinated set of services funded by the Ministry and Community and Social Services and other funders when necessary.
    Individuals and families who require services funded by M.C.S.S.; or other non M.C.S.S.
    funded organizations, will have a coordination of services involving partnerships with com- munity organizations.
    Keeping in mind the nine goals of Making Ser- vices Work for People, supports and services for our people can be designed in a way which will meet our unique needs. We must design our programs to meet the holistic needs of the individual. The physical, mental, emotional and spiritual needs required to promote balance within ourselves have to be considered. Devel- opmentally challenged adults have difficulty communication their needs; therefore, it is imperative that our programs are designed in a holistic manner.

    10. Glossary

    Adult Protective Service Worker (APSW) – a staff person to assist adults with case management, life skills, and general counselling. May provide some assistance with advocacy.

    Association for Community Living (ACL) – A non profit organization working with people who have developmental disabilities. Parents and Families of people with developmental disability have worked together to provide support and services. It is governed by a Board of Directors committed to inform the community about the needs and aspiration of people with a disability and their families.

    Autism – is a disorder of brain function that appears early in life- before the age of three. Children with autism have problem with social intervention, communication, imagination, and behaviour( they have a narrow and repetitive pattern of behaviour). The cause is unknown. Autistic traits persist into adulthood, but vary in severity. Some adults with autism function well, earning college degrees and living independently. Autism belongs to a family of related brain conditions af- fecting behaviour early in life.

    Community Living Ontario – a Federation of Associations throughout the Province of Ontario having common goals advocating Provincially for individuals and their families.

    Day Program – is about learning more about life skills and how to obtain those skills. Trying to en- courage employers to hire workers with disabilities by increasing their abilities for employment.

    Developmentally handicapped (DH) – “ is a condition of mental impairment present or occurring during a person’s formative years, that is associated with limitation in adaptive behaviour” – DSA The condition is usually determined by a physician or a psychologist.

    Continuum of Service – a full array of service delivery options in a specific program are i.e. residential care – SIL to 24hr/7 day a week one-on-one care.

    Family Home Program – It is the Association’s responsibility to ensure that a Home Study and Written report are completed prior to finalization of approval as a placement for people. In order to promote the principles and goals of the Individualized Living Arrangements, no consideration will be given for the placement of more than two Clients in the same home.

    Fetal Alcohol Syndrome (FAS) – is a medical di- agnosis that refers to a specific cluster of anomalies associated with the use of alcohol during pregnancy. The three essential traits of FAS are prenatal and/or postnatal growth restriction, characteristics facial features and central nervous system involvement.

    Fetal Alcohol Effects (FAE) – is a term used to describe children with prenatal exposure to alcohol, but only some FAS characteristics.

    Group Home – is a MCCSS approved staffed, residence where 2 or more unrelated individuals reside.

    Inclusion – is the term used to describe everyone living, working, and learning together, respecting each person as they are – including differences within one community.

    Individualized Funding – Individualized funding refers to the allocation of public funds to individuals rather than to agencies or programs.

    Individualized Living Arrangement (ILA) – the purpose of individual living arrangements is to de- velop and implement options for alternative living that will promote greater opportunities for development relationships between developmentally chal- lenged people and the community as a whole.

    Individualized Support Agreements (ISA) – upon the development of a PCP there is a requirement by MCCSS to complete an ISA which stares who is providing what services and what cost to the person. It is to be signed by relevant parties.

    Individual Support Worker (ISW) – The support worker is responsible for the overall supports and services through Person Centred Plan and the safety of the client and respect for the individual. The individual Support Worker is responsible for contributing to the overall well being and growth of each individual while being supported within the Association.

    Integration – is the term used to describe people living within the community, but not being a part of it in the fullest degree.

    Ministry of Children, Community and Social Services (MCCSS) – primary funder of DH services throughout the province – approximately 1 Billion dollars annually (2002 figures).

    Person Centred Plan (PCP) – is a process which puts the individual and their family in control of organizing supports and services. It allows them, the opportunity to clearly state what they are expecting from supports they receive; to identify and over- come gaps and needs in the individual’s life and; to promote and ensure inclusion in community life. The facilitation of person centred planning will assist people to discover, actively plan for, and work towards a desirable future. Each person’s plan is unique and is deeply rooted in personal values, gifts and capacity.

    Program Supervisor – an MCCSS employee responsible for service system coordination and delivery, normally through transfer payment agencies.

    Respite Care – “Respite” refers to short term, temporary care provided to people with disabilities in order that their families can take a break from the daily routine of care giving.

    Risk Management – the meeting of the individual’s needs while keeping in mind their best interest through the identification, analysis and response to identified risk factors.

    Segregation – is the term used to describe people not involved in the community at all but operating in a parallel separate venue.

    Services – refers to dollars expended to directly impact on the person’s improvement of intrinsic skills and/or for environmental and social ac- commodation that reduce the consequence of the condition. (Group Home, Day Program, SIL, SEP, Respite, Family Home, Clinical Treatment)

    Special Services At Home (SSAH) – The goal of the SSAH Program is to help individuals with disabilities to live at home with their families. It helps them by providing individualized funding, on a time-limited basis, to purchase supports and services not available elsewhere in the community.

    Supports – refers to the expenditure of dollars for indirect attainment of a person’s outcomes. (Case Management, Clinical Assessments, Mediator Model of Therapy).

    Supported Employment Program (SEP) – Individuals with a disability that are willing to work paid by the employer. The Supported Employment worker maintains his or her services by ensuring that the individuals are comfortable and confident with his or her job.

    Supported Independent Living (SIL) – is intended to provide intensive support and supervision for adults who are able to live in essentially indepen- dent settings with assistance from program workers on a visitation basis.

    LOST AND CONFUSED

    Choice, I have choice!
    Words, that is all they are.
    I have no choice, because,
    My choice would be my home.

    I’m lost in this strange place.
    No familiar face I see.
    I’m confused, I’m alone.
    Help me, set me free.

    I miss my people and the land.
    I miss the laughter,
    The music of my language.
    I’m lost without my home.
    Please, may I Have a choice.
    To go back to my people,
    To be cared for by my people,’
    to once again feel loved.

    To feel alive,
    To laugh
    To grow in my community.
    This is what I choose.

Wikwemikong

This is a gateway to information on the Medicine Wheel teachings, shared by Community Living Wikwemikong Anishinaabek. The articles are presented in Ojibwe and Ojicree.

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The Aging of Family Caregivers

The vast majority of people with a developmental disability are supported in whole or in part by their family. In families where the person with a developmental disability is approaching older adulthood, family caregivers are already in their senior years. As they age, families are no longer able to provide the same level of support for their sons or daughters. One or both parents may require support themselves. Aging is a dilemma for parental caregivers who must deal with their own aging and the aging of sons or daughters with a developmental disability.

Siblings as Caregivers

The aging of parental caregivers will put pressure on siblings of persons with a developmental disability to assume some or all of the care-giving role. However, siblings may be in the midst of raising families themselves or paying the high cost of tuition for their children’s post secondary education. Some siblings may be able to take over the care-giving role from aging parents; however, the extent to which they can provide support may be limited.

The majority of people with developmental disabilities are supported completely or to a significant degree by family. Consequently, most older adults with developmental disabilities are receiving support from parents who are already in their 70’s and 80’s. As older care-giving family members become unable to support sons or daughters, it poses new pressures on other family members and the service system.

The Challenges of Care giving

Paid caregivers can go home at the end of their shift. Family caregivers must carry on day after day. In the words of one family caregiver, ”My life has never been the same. Of course I love my son and would not give up my support role but I am getting older myself and just can’t keep up with the demands being made on me.” Care-giving goes beyond aging to include a number of other challenges:

Loss of Privacy

The daily demands of the care giving role reduce the caregiver’s privacy. In addition to direct support provided by family the requirements of keeping in touch with service providers, coordinating bodies and health practitioners takes up time. The caregiver is left with little personal time.

Social Isolation

The daily demands of the care-giving role reduces opportunities for getting out with friends. Socializing at home may be difficult depending on the needs of the family member.

Emotional Distress

The continuing need to be available, to plan, to intervene and to help is emotionally demanding. Care givers report feelings of helplessness, frustration and resentment. The acknowledgement of these feelings can sometimes lead to the additional distress of guilt. These are all normal human emotions in response to the challenges of continuing care giving.

Respite

There are respite services available for care givers through many long term care programs and homes. The CCAC or a local agency can provide information about respite services.

Rebalancing

Feelings of distress experienced by care givers are a signal that it is time for rest and relaxation. Such feelings may also be a signal of the need to talk with a friend or counsellor about the pressures of the care giving role. Here are a few strategies that care givers can use to maintain balance:

Care for Yourself

Looking out for yourself is not an act of selfishness. It is a means to refuel, renew and rebalance so you can maintain your care-giving role more effectively.

Acknowledge Your Care-giving Accomplishments

The support you provide for your family member means they can enjoy life, remain safe, feel secure and learn. These are gifts you give. They make the difference. Take some time to recognize what you do and to celebrate your accomplishments. Care-giving is a vital role that not only ensures quality of life for your loved one. It also makes your community a better place.

Acknowledge Your Feelings

Feelings are friends that tell us important things about ourselves – but we must listen, accept and act on them in ways that are beneficial.

Get the Help You Need

We all get by with a little help from our friends or a long hot bath. If you need some help, whether it is respite for a holiday, a friend to talk with or some quiet time to yourself, take the time to seek it out. Refresh yourself so you can carry on.

Maintain a Sense of Self

Care-giving can interrupt ability to remember who you are and what you need. Take some time to reflect on your own life, what you need and how you can get it.

Guardianship: Office of the Public Guardian and Trustee

What is the Public Guardian and Trustee?

While Ontario provides for citizens to make their own decisions and appoint substitute decision-makers, there is also provision for a Public Guardian and Trustee who can act on behalf of citizens who are mentally incapable of dealing with their own finances and where there is no one else who can do so.

How is the Public Guardian and Trustee appointed as guardian for property?

A physician or health care practitioner who has been trained as an “assessor” has the authority to determine whether a person requires a substitute decision-maker to act on his/her behalf. Where no attorney for property has been appointed, or the person appointed is unable to act, the Office of the Public Guardian and Trustee (OPGT) becomes the statutory guardian of property once an individual has been assessed as incapable of managing property and found in need of such assistance.

Are fees charged by the Public Guardian and Trustee?

The OPGT is required to charge fees for services provided to individuals whose property falls under its guardianship. Fees are based on the Regulations to the Substitute Decisions Act and are currently set at 3% of the assets in the hands of the OPGT plus 3% of disbursements and a care and management fee of 3/5ths of 1% of the average value of the assets. Legal work, tax filing and property management services are charged at a rate established by the OPGT.

Is it possible to replace the appointment of the Public Guardian and Trustee?

A relative of the person may apply to replace the PGT as the guardian of property. The PGT will consult with the individual and his/her caregivers upon such a request and require that the relative submit a management plan for the incapable person’s property.

A relative of the person may request that they become the guardian. The Public Guardian will consult with the individual and his/her caregivers upon such a request and require that the relative have a reasonable plan to provide guardianship support.

Can the appointment of the Public Guardian be appealed?

An individual may contest the appointment of the Public Guardian and Trustee. A client representative, who is an employee of the Office of the Public Guardian and Trustee, can provide guidance on how to do this. The individual may use the services of a lawyer to appeal the appointment. The appeal is made to the Consent and Capacity Board. (See information about the Consent and Capacity Board elsewhere in this Guide).

What services are offered by the Public Guardian and Trustee?

The Office of the Public Guardian and Trustee (OPGT) offers the following services:

  • Property Guardianship.
  • Personal Care Guardianship.
  • Decisions About Treatment and Admission to Long Term Care.
  • Guardianship Investigations.
  • Appointment of Private Guardians of Property.
  • Acting as Litigation Guardian.
  • Estates Administration.

Where can I find more information about the Public Guardian and Trustee?

The Office of the Public Guardian and Trustee offers information brochures on their web site:

  • When the Office of the Public Guardian and Trustee Becomes Your Guardian of Property.
  • Estates Administration.
  • The Role of the OPGT in Guardianship Investigation.
  • The Role of the OPGT in Providing Property Guardianship Services.
  • Becoming a Guardian of Property.
  • The Role of the OPGT in Making Substitute Health Care Decisions.
  • Powers of Attorney and “Living Wills” Some Questions and Answers.

Office of the Public Guardian and Trustee – 595 Bay St., Ste. 800; Toronto ON M5G 2M6, Toll-free: 1-800-366-0335, Phone: 416-314-2800, TTY: 416-314-2687, Fax: 416-314-2695 www.attorneygeneral.jus.gov.on.ca/english/family/pgt/

Sourced from GUIDE TO PERSONAL CARE AND PROPERTY For Older Adults with a Developmental Disability , The Ontario Partnership on Aging and Developmental Disabilities, 2008 http://www.opadd.on.ca

Property: Power of Attorney for Property

The Substitute Decisions Act sets out the legislative framework for granting continuing powers of attorney for property and guidelines for the persons acting as attorneys for property.

What is the appropriate thing to do about aging and decisions about property?

An individual may become unable to make decisions about his/her property and finances either through a serious illness or accident. All adults in Ontario are encouraged to make a continuing Power of Attorney for Property, appointing someone who can make certain financial decisions if required. The Power of Attorney provides a safeguard against decisions being made by others who do not know the person well.

How is a Power of Attorney put in place?

There is no single formula for choosing the substitute decision-maker. It must be done with due consideration for the needs of the individual and who can best ensure the individual’s wishes are respected if he/she cannot make decisions about finances and property. There are also some legal requirements that limit who can become a substitute decision-maker.

The process of giving authority to someone else for finance and property decisions is fairly straightforward:

  1. List the person’s assets and where they are located.
  2. Review with the person, what is important to him/her (beliefs, values, preferences and wishes).
  3. Identify the details of what the person wants a substitute decision-maker to do in the event that he/she can no longer make decisions.
  4. Identify the substitute decision-maker(s).
  5. Create the Power of Attorney.

The Continuing Power of Attorney for Property is signed and dated by the person appointing the attorney. Two witnesses must watch the person do this and then must co-sign the document in the presence of that person and in the presence of each other. The resulting legal document is known as a Power of Attorney for Property.

Should a lawyer be used to set up a Power of Attorney?

Since the Power of Attorney is a legal document and the appointment of substitute decision-maker(s) is a very significant event, it is recommended that a lawyer be consulted in all cases. The lawyer can provide help with final wording to ensure it is done correctly and that the person’s wishes are fully protected.

What if the older adult cannot name the substitute decision-maker?

Where the person is not capable of making a POA for property, either the PGT becomes the statutory guardian and is later replaced by a family member or there is a court application to appoint a guardian of property.

What can the substitute decision-maker for property do?

A Continuing Power of Attorney for Property allows the substitute decision-maker(s) to make decisions concerning the person’s assets including banking, signing cheques, buying or selling real estate and buying consumer goods.

The appointed attorney can do almost anything with the person’s property that the person him/herself could do except make a Will and change beneficiary designations on life insurance policies, RRSPs and RRIFs.

The document may define limits on the attorney’s power over certain property and transactions.

Who can be an attorney for property?

An Attorney named for property must be:

  1. At least 18 years of age.
  2. Mentally capable of fulfilling the attorney responsibilities.

When does the Power of Attorney for Property take effect?

The Continuing Power of Attorney for Property comes into effect when the person signs the Power of Attorney document or at such other time as the person indicates on the document.

Can more than one Substitute Decision-Maker be named?

Yes. If the person names more than one Attorney for Personal Care then they must also specify how the parties are to make decisions about personal care. There are three options available when there is more than one attorney.

  1. Joint Decisions: substitute decision makers must make any decisions together or jointly. No one attorney can act alone.
  2. Several Decisions: any one of the substitute decision-makers may make a decision on his/her own.
  3. Joint and Several Decisions: substitute decision-makers can act alone or together depending on circumstances such as who is most readily available.

Where can I find more information on Power of Attorney for Property?

Sourced from GUIDE TO PERSONAL CARE AND PROPERTY For Older Adults with a Developmental Disability, The Ontario Partnership on Aging and Developmental Disabilities, 2008 http://www.opadd.on.ca

Stories About Personal Care Issues

Joan Plans for Her Future Health Care Needs

Joan is in her late fifties. During the past year she has been diagnosed with a debilitating condition that will affect her independence. She has become aware that the nature of her condition will require making decisions about treatments. Joan is finding that it is sometimes difficult to understand the information about her condition and to make decisions about required treatments. Joan has talked about this with the family, friends and paid caregivers in her support circle. She has decided to ask for help with making health care decisions by appointing one of her family members as her substitute decision-maker for health care decisions. This substitute decision-maker will be given authority by Joan and will be able to make decision on Joan’s behalf only when Joan is no longer able to do so for herself. The mechanism Joan will use is called the Power of Attorney for Personal Care.

Joan had initially thought she would like to appoint one of her favourite paid support workers to the role of substitute decision-maker for personal care. However when the support circle looked into it they discovered that the person could not be someone who is paid to provide the individual with health care, residential, social, training or support services unless the person is a spouse, partner or relative. Joan’s younger nephew was also ineligible to become a substitute decision-maker for personal care since he was younger than sixteen years of age.

Joan and her support circle gathered some information on the process of establishing a Power of Attorney. They learned that it was best to lay the groundwork for decision-making prior to identifying the substitute decision-maker. In this way Joan would be in a better position to know what she wanted the person to do and who would be best suited to the role.

The support circle scheduled a series of meetings to help Joan. At the first meeting they explored how Joan made her health care decisions. The group met a second time and asked Joan to talk about her beliefs, values and wishes so these could be known when a decision might be made on her behalf. A third meeting focused on having Joan identify the details of what she wanted a substitute decision-maker to do in the event that she could no longer make decisions herself. Then the group reviewed the various responsibilities that could be given and helped Joan decide which of these she wished to give to the substitute decision-maker for personal care. After this foundation was laid, Joan decided to appoint her older sister. Joan and her sister then made an appointment with the family lawyer to complete the Power of Attorney forms. While it was not a requirement to use a lawyer, the support circle felt this would be a good course of action since the lawyer, as an independent third party, could ensure the resulting legal document fully represented Joan’s wishes.

Joan’s Power of Attorney for Personal Care allowed the substitute decision-maker to make decisions related to health care, nutrition and safety. The scope of these decisions was fully defined in the Power of Attorney document. Joan could have also granted her older sister decision-making power related to shelter and clothing. However, Joan felt she would prefer to retain this decision-making power for herself. Joan continues to make her own health care decisions but involves her older sister more often in preparation for the day when Joan may be unable to decide for herself.

More information about the Power of Attorney for Personal Care can be found in this Guide: Section III B. – Personal Care: Power of Attorney For Personal Care.

Sarah Plans to Move From Her Group Home to a Long Term Care Home

Sarah lives in a group home with support from staff of the local developmental services provider. Over the years Sarah has faced a number of health issues. The agency has required that Sarah’s support worker provide guidance to her for health care decisions. In addition, the support worker has always attended medical appointments with her. This practice has been in place for more than thirty years.

At the age of 40, Sarah’s health care needs began to change. Her support worker noticed that the emerging health issues required additional support for Sarah. The agency accommodated these changes over the next ten years and then began to find they could no longer do so. After several discussions with Anne’s support circle, Anne decided she would move to a long term care home. The agency contacted the local CCAC for information about a move to a long term care home.

One of the pieces of information the CCAC required was the name of Sarah’s substitute decision-maker for health care decisions. The agency provided the name of Sarah’s principal support worker. The CCAC indicated that the support worker was not legally entitled to hold such a role and that Sarah would require a substitute decision-maker appointed under the Health Care Consent Act. The agency replied that the principal support worker did indeed fulfill such a role in accordance with agency policy and long-standing practice. The CCAC maintained its position and advised the agency that it could not complete the application process without a substitute decision-maker.

The developmental services provider investigated the provisions of the Health Care Consent Act and found that there was a list of possible substitute decision-makers who could be appointed, with the Guardian being at the top of the list. The agency advised the CCAC that it could be named a substitute decision-maker under the Act because the agency fulfilled the guardianship role for Sarah.

The CCAC refused to accept the agency’s interpretation of the Act and sent the agency’s Executive Director a letter outlining the legislative requirements that a substitute decision-maker be appointed under the Health Care Consent Act prior to admission. The CCAC correspondence noted that the Guardian could be a parent or legally appointed guardian but could not be a staff person of the developmental services agency. Finally, the letter advised the developmental services agency that if they were unable to identify a suitable substitute decision maker, the appointment could be handled by the Consent and Capacity Board that is authorised to appoint representatives to make decisions for an incapable person with respect to admission to a care facility.

The Executive Director discussed the matter with Sarah’s principal support worker. They agreed that it would be in keeping with their agency philosophy if Sarah was able to make the appointment rather then submitting the matter to the Consent and Capacity Board. Consequently, the Executive Director asked Sarah’s principal support worker to investigate who, could be appointed by Sarah as a substitute decision-maker. When the principal support worker investigated Sarah’s case file, she discovered that Sarah had no legally appointed guardian and had lost all contact with her parents when she had been placed in the Ontario government facility for people with a developmental disability at the age of five. However, Sarah had a close friend, Joanne, who was a member of Sarah’s support circle. The support worker thought Joanne might be a possible substitute decision-maker.

The support worker reported these findings to the Executive Director. The support worker was directed to investigate with Sarah whether she would accept Joanne as the SDM. If she did, then Sarah would have to establish a Power of Attorney for Personal Care as provided by the Ontario legislation. The person appointed to this role by Sarah could then be identified as the substitute decision-maker for health care as required under the Health Care Consent Act.

Agency staff found these legal requirements complicated and confusing. However, they facilitated the arrangements with Sarah in order to move her long term care home application through the process.

The Executive Director realized that his agency was out of step with the evolving legal requirements around SDM. He discussed the problem with the Program Director. A few weeks later, the Program Director arranged a training session for staff on substitute decision-making. A representative of the Advocacy Resource Centre for the Elderly provided training and distributed an information booklet. Over the next several months the agency began to review the requirements of legislation and regulations governing substitute decision-making. This review lead to an overhaul of agency policy and required additional staff training to help employees understand the resulting changes to their job responsibilities.

More information about appointing a substitute decision-maker under the Health Care Consent Act and the role of the Consent and Capacity Board can be found in this Guide: Section III D. -Consent and Capacity Board and Section III F. – Health Care: Requirements Under the Health Care Consent Act.

Community Living Service Provider Wants to be in the Communication Loop on Louanne’s Hospital Discharge

Louanne became seriously ill and entered hospital for an extended stay. The service provider operating the group home where Louanne lived kept her bed available so she could return homefollowing hospitalization. A couple of years earlier, Louanne had appointed her mother, Belinda, as Power of Attorney for Personal Care. Belinda was approached by the hospital for consent on some of Louanne’s health care decisions when Louanne was unable to provide consent herself. Belinda was suffering with a mental health problem that sometimes hampered her ability to focus on the consent process on behalf of her daughter. Consequently, Louanne’s brother became involved in communications from the hospital and provided help to his mother in exercising Louanne’s Power of Attorney for Personal Care.

The agency operating the group home discovered that Louanne’s discharge plan was proceeding and a discharge date was being considered. However, the agency had not received any communication from the hospital and Louanne’s brother was unaware of the agency’s support role with Louanne. The agency contacted Louanne’s mother but discovered she was unable to communicate clearly about the discharge plan. The agency became concerned that they would be unable to plan ahead for appropriate staffing and other support that Louanne would need when she returned to her home. Subsequently, the agency Program Director arranged a meeting of the hospital discharge staff with Louanne’s mother and brother. The discussion resulted in the discharge plan being shared with the agency and an agreement to include them in the communication loop.

Sourced from GUIDE TO PERSONAL CARE AND PROPERTY For Older Adults with a Developmental Disability , The Ontario Partnership on Aging and Developmental Disabilities, 2008 http://www.opadd.on.ca

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