Regional Residential Services Society
Response to
"Renewing the Community Supports for Adults Program"
A Discussion Paper
June 30, 2004
Introduction
Regional Residential Services Society (RRSS) supports 185 adults with intellectual disabilities within the Halifax Regional Municipality. RRSS is a non-profit organization, governed by a volunteer Board of Directors, and is the largest community-based service provider in Nova Scotia.
Local branches of the Canadian Association for Community Living (CACL) originally established the services administered by RRSS today. In 1979 the provincial Dept. of Community Services approached local municipal governments and CACL branches to explore possible efficiencies in bringing together the community residence work of four, previously separate, organizations. Out of this initiative, RRSS was born and we became one of the region's first amalgamation initiatives.
RRSS is a membership driven organization, where our stakeholders (mainly families with disabled family members) guide our vision, values and mission. Therefore, RRSS's roots are firmly planted in the advocacy movement and to this day RRSS's Board composition reflects this community of interest.
Thank You to Dept. of Community Services
RRSS commends the Dept. of Community Services (DCS) for undertaking the renewal of the Community Supports for Adults (CSA) Program. The publication of the resulting Discussion Paper has provided an opportunity for organizations across this province to engage in dialogue and to propose suggestions that will “help create a new model for services for people with disabilities” (Discussion Paper, p 1). RRSS appreciates the opportunity to be a part of this very necessary process. In providing this response to the CSA Renewal Discussion Paper, we see our work as just beginning and RRSS offers ongoing consultation and dialogue with DCS as it moves forward in supporting disabled Nova Scotians.
RRSS's Consultation Process
In preparing our response, the Board of Directors of RRSS solicited feedback from families and staff to incorporate into this document. We looked to groups such as People First to represent the direct interests of consumers.
Using a process of facilitated discussion, RRSS held five consultation meetings. The context for our discussions was:
1. RRSS's Mission Statement
"Regional Residential Services Society offers residential choices that support the individual dreams and goals of adults with intellectual disabilities". (November 25, 2002)
2. RRSS's Statement of Principles and Philosophy – This contains the values espoused by RRSS as we pursue our Mission (see Appendix A).
3. The vision, mission and principles of “Inclusion International” (www.inclusion-international.org). Inclusion International acts as an agent for change on the basis of four main principles:
Inclusion in all aspects of everyday society
Full citizenship which respects individual human rights responsibilities
Self-determination in order to have control over the decisions affecting one's life
Family support through adequate services and support networks to families with a disabled member.
Both RRSS's beliefs and those of Inclusion International served to inform and guide our consultations, making for lively and engaging discussion. Our fundamental question in preparing for this response was “How do the proposals contained in the DCS Discussion Paper fit with the beliefs of RRSS and those of Inclusion International?” The term “RRSS” throughout this paper represents the collective answers of Board, families and staff to this question.
Central Themes identified by RRSS in Response to the CSA Renewal
1. Economic considerations appear to be the central drivers of the Renewal Initiative. While RRSS is not blind to economic matters, it is our belief that money cannot be the primary driver for any model of services for people with disabilities.
RRSS believes that the rights and needs of people should be paramount. A commitment to a person-centred philosophy should be the single most important driver of system reform.
2. The discussion paper repeatedly refers to making changes within available resources. The problem with this premise is that sufficient funds have never been allocated to people with disabilities in this province. As one family member stated during our consultations, "Government needs to evolve a plan that meets the needs of persons with disabilities and not a plan to meet the system's needs".
We recommend that government make a commitment to support those disabled persons who need service and make sufficient funding available to properly fulfill this commitment.
3. While the CSA renewal process is under way many disabled Nova Scotians are seriously disadvantaged by the present moratorium on services. It is our understanding that DCS foresees a 3 to 5 year period of implementation following completion of the renewal process. We submit that those awaiting service cannot, and should not, wait any longer.
We recommend that the moratorium on services be lifted immediately.
4. The Renewal process needs to close the gaps that inevitably exist when different government departments are responsible for various elements of a disabled person's life. The Discussion Paper addresses this matter but in our opinion does not go far enough in preventing people from falling between the cracks.
We recommend that the government of Nova Scotia create an empowered coordinating body to oversee all matters related to disability and encompassing all jurisdictions including community services, health, justice and education. This body should also provide a centralized point for families to access information.
5. Support across the life span is integral to any model of service. Moving from one's home or gaining or losing services as a product of age is not acceptable.
We recommend that the above proposed coordinating body, and future models of support, provide for seamless support and consistent funding policies throughout one's life, from birth to death.
6. The world is changing rapidly. The sharing of information and practices with other countries and provinces is easily accomplished and can serve to improve supports in the future.
We recommend that DCS commit to a regular review of CSA programs in the future, perhaps every 5 years.
7. Implementation of many of the proposals of this Discussion Paper will require an expenditure of funds. Recruitment of adult foster homes, improvement of family supports and the adoption of a new assessment system are but a few examples. It is common knowledge that DCS is desperately under-resourced, both in human and financial resources. Yet the Discussion Paper consistently maintains that all changes must be within existing resources. With respect, this is an impossible task, unless of course, it means that funds will be moved from existing supports. That, too, would be unacceptable. Meanwhile many families wait for long periods of time for any service whatsoever.
In order to move forward with the renewal process DCS must be prepared to invest at the front end of the change process.
8. Employment and vocational pursuits were not significantly addressed in the Discussion Paper. They are, however, important elements of community living and it appears that added attention will be paid to this area in the future.
We support DCS's intention to review vocational services and we recommend that such matters as community employment, evening work, partial retirement, post-secondary education, job skills training and long waiting lists be factored into planning for the future of vocational services.
9. In order for the renewal process to be meaningful and lasting, the rights and entitlements of persons with disabilities need to be enshrined in legislation. In addition, government needs to ensure that the rights and commitments contained in any new legislation are also reflected in the legislation of other government departments such as Health and Labour.
We recommend that the government of Nova Scotia enact “Disability” legislation that enshrines rights and entitlements to service and support for individuals with disabilities.
Furthermore, we recommend that this new legislation protect the right to uninterrupted “security of home” for persons with disabilities.
Review of Section 5 of the Discussion Paper
5.1 The Need for Vision
Question:
Do you agree /disagree with the vision described in this section?
Answer:
DCS is to be commended for identifying the need for a vision as the cornerstone to setting the direction for change.
RRSS agrees with the components of the vision as it is written, but believes that it needs a shift in focus from being a vision for a system to being a vision for the individuals who will be supported by that system. Also, the vision must include de-institutionalization and must include a commitment to those not presently being served.
Question:
Do you agree/disagree with the values and principles described in this section?
Answer:
RRSS supports the values and principles set out in this section and proposes the following additions to the section on Client-Centered Values:
(i) person-centredness, where the individual (and/or representative) is integral to all planning and decision processes
(ii) entitlement to supports in a timely fashion
(iii) choice
(iv) flexibility, based on changing needs
(v) pursuit of dreams and goals, and not just needs
(vi) privacy
(vii) relationships
(viii) sanctity of home
(ix) confidentiality
We are concerned that some of the principles set out in the Discussion Paper may serve to impede the vision. For example “sustainability” could stand in the way of entitlement.
5.2 Clarifying Our Role and Mandate: Who Should We Serve?
Question:
Three options were presented in this section regarding the groups of people a renewed CSA program would support. Which option do you think is best?
Answer:
RRSS supports Option 2 providing both of the groups suggested under Option 2 are added to Option 1 and with the further addition following the words “nursing and medical care” of “to the same extent as the rest of the population”. Another way that this was stated by a family member was “My sister should be able to remain in her home for as long as she is capable, until her health will no longer allow her to stay.”
The mandate should also acknowledge that supports to persons with disabilities need to be delivered within a social model and not a medical model. Therefore, individuals with a dual diagnosis or those who require health/nursing interventions at points in their lives should continue to receive supports under the social model of CSA, with funding/supports being imported from health or other jurisdictions as needed.
Home Care is one good example. This service (funded by Health) enables Nova Scotians to shorten or avoid hospital stays by receiving nursing services in their own homes. The same opportunity should be available to persons with disabilities in their own homes, including group homes, small options or supported apartments.
RRSS also recommends that the mandate of CSA include the enhancement of communication mechanisms in order that information is readily available to families.
Question:
Do you agree/disagree with the proposed mandate described in this section?
Answer:
RRSS disagrees, as the description does not reflect the groups covered above. As is the case with the rest of the population, persons with disabilities are maintaining good health longer and living longer lives. In the Discussion Paper DCS identifies the need for a new model to resolve gaps in service. Establishing an age-based restriction is more likely to create a gap, than avoid one. The mandate for CSA Renewal should mirror trends within the general population where those over the age of 65 expect, and are expected to, “age-in-place”.
5.3 Strengthening the Residential Support Continuum
Question:
This section described the idea of developing a wide range of supports and residential options for Nova Scotians with disabilities. Do you believe developing this range of supports will strengthen the CSA program?
Answer:
Strengthening Family Support Programs is much supported by RRSS. There is real value in commitment to the family unit, providing this is not simply downloading on families, but rather enabling healthy families through proper and timely support. Many of the families who approach RRSS for service state that with proper support they could postpone their disabled family member leaving home. It is important however that In-home support be a choice for families and not the only option that is made available to them.
The content of this section is not, for the most part, consistent with the mission and values of RRSS. Neither is it consistent with the strong vision and values articulated by DCS in Section 5.1. Aside from the increased weight given to family support, a strong consensus was expressed among those consulted that a “disconnect” occurred between the vision and values articulated in section 5.1 and the support options described in Section 5.3.
As expressed during family consultations:
"This looks like an attack on small options."
“The Paper implies that small options are not working. That is not the case. Our sons/daughters/brothers/sisters are doing just fine. “
“It looks like people who need high support will end up in institutions (Supported Living Centres). This is real back-sliding.”
“Small Options are operating perfectly well. If it ain't broke don't fix it”
“We can't support a document where people with high needs would be institutionalized.”
“This flies in the face of past DCS commitments”.
To expand on the above concerns:
1. Choice of living arrangement and choice of housemates do not appear to factor into the support continuum.
2. Increasing the size of homes to “4 or more” people is worrisome. The issue is not so much that “4” is a bad number, but rather that the number is dictated by the system rather than by the needs and/or compatibility of the individuals who share a home. RRSS has had experience with all sizes of groupings and we can state with certainty that smaller groups promote enhanced living experiences, and for certain individuals larger group living can be destructive to both the individual and their housemates.
3. “Or more” is a slippery slope. When does the system decide that 5 or 8 or 12 is now the best size? One family member stated during our consultations, “My sister lived in an 8 person group home. Now she lives in a small option of 3 and she has never been happier. I would not mind her living in a group of 4, but absolutely no more. That would be a step backward for her.”
4. This same family member said, “The report really worried me. It looks like they are going back to institutions, with the Supported Living Centres. This must not happen”.
5. The levels of support that are stated as criteria to live in community homes pose barriers for many of those who are already living in community. Furthermore, those with moderate and high support needs will be denied the opportunity to reside in smaller groupings and those with “multiple needs/severe challenges” will be institutionalized (or reinstitutionalized) in Supportive Living Centres. This is a backward step for many who are currently residing in small options and/or developmental residences. Many individuals presently served by RRSS would be barred from their present living arrangements under this model and a number would be institutionalized.
6. The model presented in the Discussion Paper perpetuates the “fitting of people into services” instead of “fitting services around individuals”. A truly person-centered system would support the latter.
7. Larger living arrangements are likely to mean shared bedrooms. Lessons learned over the past 2 decades leave no doubt that single bedrooms are imperative.
8. The support continuum needs to allow for retirement from vocational pursuits. The report is silent on this subject and we suggest that future DCS planning make provision for individuals retiring and remaining in their home and community.
9. Many of those consulted by us expressed concern about the viability of adult foster relationships. This is not to undermine the very committed relationships that have developed and really work for some people. However, fostering for adults presents a number of challenges. Many foster relationships don't last. When this happens, it is the disabled person who moves, and one's sense of home and belonging is eroded.
One of the people in our consultation groups summed up this section this way:
“This model fails to respect the fact that adults with intellectual disabilities need as much as anyone else, to have a home. It does not consider the wishes of residents to live where and as they want, but rather groups them by their disabilities. I believe this range of supports needs to be adjusted to include individual, flexible needs and wants.”
A similar message is captured in “Beyond Programs – A Parable” by Michael McCarthy, attached as Appendix 2.
5.4 Strengthening Assessment/Determining Appropriate Support
Question:
Do you believe that using a combination of diagnosis and functional assessment would be the best approach to identify the appropriate amount and types of supports for individuals with disabilities?
Answer:
We agree that functional assessment (including the 11 key areas listed in the report) should be added to diagnosis when identifying the amount and types of support needed by individuals. Diagnosis and functional assessment are two important components of the support planning process. In addition, several other components need to be added.
These are:
Personal/family choice
Individual dreams and goals
Relationships, including intimate relationships
Personal likes and dislikes
Life history
Environment, location and compatibility needs and issues
Vocation
Life long learning
Transportation
Safety
Other important considerations/recommendations:
1. Because individuals and their needs and choices change over time, the assessment process needs to be a fluid one, conducted on an as needed basis in response to changes in any of the component areas throughout the life cycle.
2. Assessments should be conducted by independent third parties that are free from the potential conflict of interest posed by either service providers or government officials.
3. The following need to be key informants in the assessment process: the person with a disability, family, present support staff (residential and vocational), physician, other specialists and other members of the individual's support network.
4. RRSS uses the SIB-R (Scales of Independent Behaviour –Revised) as a functional assessment. We understand that this interfaces with ICAP (Inventory for Client and Agency Planning) and is being used by some states in the US as a system planning tool. We suggest that DCS take a look at this assessment and solicit information on other assessment tools in use within N.S. RRSS would be pleased to share our experience in the area of functional assessment as DCS moves toward selection of an assessment process.
5. Many of the additional components that we recommend above would be captured in a process of Essential Lifestyle Planning. We recommend this as a process to complement diagnosis and functional assessment.
5.5 Strengthening Support Planning/Client Involvement
Question:
Do you believe that creating a Client Support Team would be a good way to actively involve clients in the planning process?
Answer:
RRSS supports the creation of Support Teams as a mechanism to involve individuals in the planning process. We recommend, however, that:
1. The word “client” be replaced with the word “individual”, thus “Individual Support Teams”.
2. Persons with disabilities (and their families) have not traditionally been empowered to exercise their voice or their choices. The support planning process will need to incorporate processes that ensure meaningful participation by individuals and their families. For example, families should be invited to bring to the table other members of the individual's family or support network.
3. As in the case of assessment, support planning needs to be seen as an evolving process, responding to changing needs, circumstances and choices over time.
Question:
Do you believe that individualized client support planning would be an effective way to build on client strengths and address unmet needs?
Answer:
The concept of individualized support planning is consistent with RRSS's beliefs and values. We recommend that:
1. In keeping with a person-centred philosophy, the DCS Case Manager should not play the coordinating role. Large caseloads and conflict of interest with the funding function could both impede the effectiveness and the objectivity of the Case Manager in the role of team coordinator.
2. The coordinating role of the Individual Planning Team should also not fall to the service provider, also because of potential conflict of interest.
3. The role of coordination could be assigned to the individual or his/her representative.
4. For individuals who cannot, or prefer not to, be represented by family, an “Office of Advocacy” should be created to provide third party representation. This role is sometimes referred to as “service navigator” or “service broker”.
5. Each individual should have an advocate (either family or other third party) and guidelines need to be available to advocates on their role and responsibilities.
6. Care should be taken to ensure that outcomes do not exclude simply “living one's life”.
5.6 Improving the Quality of Services for Clients
Question:
Do you believe that quality of life standards should be a cornerstone of supporting persons with disabilities served by the CSA program?
Answer:
RRSS believes that standards for service quality are an important part of service delivery. The standards against which quality of life is measured should first and foremost be person-centred, driven by the interests of the individual being supported. For example, the evaluation of “home-like” is a very personal matter. In fact, services should not be “home-like”. They should be “home”, whatever that represents to the individual(s) whose home it is.
Most important among quality of life indicators are:
the ability to make personal choices
an atmosphere that enables the individual to live happily and to develop as a person
empowerment of individuals to make decisions
work and other opportunities for community pursuits
Systemic minimum standards are also important. Homes need to be safe and for this reason government should utilize housing and building codes to set minimum safety requirements.
Quality of life is best measured through the eyes of the service user. Happiness, peace of mind and a sense of satisfaction or achievement need to be valued as indicators of service quality. It is also important that standards and quality of life indicators leave room for the “dignity of risk”.
Question:
Do you believe that periodic reviews of quality of life indicators would benefit clients supported by the CSA Program?
Answer:
RRSS supports ongoing evaluation of service quality. Quality of Life Indicators should be tied to the Individual Support Plan. As individual's needs and desires change over time, so will their support plan and so must their quality of life indicators.
5.7 Strengthening the Funding Process
Question:
This section outlined three funding policy options. Which option do you support?
Answer:
RRSS strongly supports the concepts of consistency and transparency in establishing funding arrangements. DCS is quite right when it acknowledges that a standardized funding process has not been in place for some time. RRSS welcomes the development and publication of funding guidelines and standards as referenced in the Discussion Paper. Linking the funding with the service agreement is also a good idea, providing that the service agreement is individualized and linked to the Individual Support Plan.
Of the policy options presented in the Discussion Paper, option 2, with modifications, comes closest to the desired funding model. To reflect these modifications, RRSS proposes a fourth option:
Option 4:
Establish an approved budget and per diem rate for each resident, based on the supports indicated in the Individual Support Plan and based on actual expenses (e.g.: salaries, utilities, shelter, etc.) and published standards (e.g.: administrative expenses).
Option 3 appears to be the DCS option of choice, as the Discussion Paper states “Moving toward standard prices for each residential support option is a logical next step” (p 29). The problem with this option is that it presupposes that Individual Support Plans will all lead to predefined types of services with predetermined costs. This approach is in direct opposition to the principle of person-centred planning and support.
Funding also needs to be flexible and responsive to the changing needs of individuals. Such flexibility will ensure that increased needs are met and that no disincentives stand in the way of decreasing needs and the desire to “try” something more independent.
Question:
Do you believe that funding portability is a good idea?
Answer:
The DCS proposal to introduce portable funding is a good one. However, the concept of portability should be expanded beyond geographic portability to include portability from service provider to service provider (based on individual/family choice) and even from family to service provider and vice versa. Portability from province to province is also an issue for some and the lack thereof has posed barriers for individuals who wish to move when their families relocate.
Another form of portability applies to cross-jurisdictional funding. Individuals who are typically funded by DCS may encounter health (physical or mental) or justice issues that require additional supports. Often these supports are best provided in one's own home, as is the case in the non-disabled population. Future legislation, regulations and funding policies need to enable this approach. In other words, funding needs to be portable from one government department to another.
5.8 Strengthening Accountability
Question:
Do you believe that service agreements with service providers would strengthen the CSA program?
Answer:
RRSS supports the concept of service agreements providing the agreements are individualized and between DCS, the individual with a disability/family, and the service provider. Once again, a person-centered philosophy needs to guide this concept and service agreements should be subject to frequent review and expected to change over time, again with the changing needs of individuals.
The Discussion Paper proposes “a written service agreement, standardized for each type of residential support option”. Using RRSS as an example, one type of support option might be our apartment program. The 25 people who receive support in their apartments all have different needs, abilities and support requirements. Therefore funding can vary from one person to another. If the paper is proposing that one service agreement would cover all of the people within an agency's service type, there is a risk that people will have to fit into service types rather than services being tailored around an individual. “Group” service agreements would not be consistent with the values of RRSS nor those proposed by DCS in earlier sections of the Discussion Paper.
Service Agreements can provide an important element of accountability. The parties to Service Agreements should be:
- Service Provider/s
- DCS
- Service user and/or family
One other note: the monitoring of performance expectations should refer to the performance of the service provider and not that of the service user. Individuals who are in receipt of service should not feel like they have to perform to some standard in order to be participants in the service. They are simply living their life.
5.9 Strengthening Licensing Safeguards
Question:
There were three licensing options presented in this section. In your opinion, which option would work best?
Answer:
There is no real rationale for tying licensing to the size of a building. Furthermore, the current Homes for Special Care Act is badly outdated. Nova Scotia needs new legislation. RRSS proposes that this new legislation be “Disability” legislation that addresses not only the approval of living arrangements, but enshrines rights and entitlements for persons with disabilities and mandates an overseeing body that transcends the present departmental jurisdictions.
Approval of living and support arrangements would be best served by licensing Service Providers and holding them accountable for clearly defined service standards. Licensing people's homes is not desirable. Rather health, safety and personal well being can be protected through agency standards and individual service agreements. The latter allows for individualized safeguards.
A short story will illustrate how individual safeguards is a better way. Under the current Homes for Special Care Act residents of group homes are not permitted to be left alone in the home. Meanwhile, not every individual in the home needs 24/7 support and the opportunity to be left alone is an important part of transitioning to more independent living. The 24/7 regulation cost one resident a job because the work was evening work and there would have been extra staffing costs for him to be at home during the day, when he was quite capable of being on his own.
In conclusion, RRSS supports Option 2, providing it means licensing service providers and using individual service agreements to safeguard service users.
Also, RRSS supports the strengthening of standards and safeguards for Adult Foster Homes and In-home Support Services. While abuse can occur anywhere with vulnerable populations, foster homes pose more risk if for no other reason then the fact that there are fewer people coming and going; fewer eyes on the situation. Therefore, special safeguards are needed in the area of monitoring and supervision.
Clarifications:
Participants in our consultation process asked that we convey the following pieces of information to you:
1. Per Diem Rates
On page 8 the Discussion Paper states “The cost of services, particularly in small option homes, now commonly exceeds $250 – 300 per day.” We find this statement misleading. As the largest community based service provider in the province (185 individuals, some with “multiple needs/severe challenges”), RRSS rates should provide a reasonable sampling of the costs of community living.
Our average rates follow:
| Small Options |
|
$225 per day |
| Group/Developmental Homes |
|
$142 per day |
| Apartment Program |
|
$45 per day |
| |
|
|
| Overall weighted average |
|
$172 per day |
2. Three-person homes
Page 21 of the Discussion Paper states “CSA staff and some service providers have found that three-person homes are not always the best for clients, as one of the three clients is often 'left out' “. With 94 people living in over 30 homes, there is nothing in RRSS's experience to support this. One person described the statement as fatuous. Others affirmed that this had never presented problems for their family members and noted that to the contrary, three persons afforded the opportunity for varied relationships with persons of varying interests.
3. History Revisited
Page 7 of the discussion Paper states “The focus on developing three-bed small options as the alternative to institutional placement has meant that very little attention has been given to enabling people to live in family settings, either with their own families or with foster families”. This statement implies a cause and effect relationship that we are unable to understand. There is nothing about these various approaches that makes them mutually exclusive. Rather, they are all important components of a system that offers choice to individuals and their families.
Similarly, page 18 of the report states “Options like in-home support, adult foster home arrangements, supported apartments and group homes have not been developed to their full potential.” In actual fact, until the mid-1980's all community residences in the province were group homes and developmental residences, some for as many as 12 persons. Undoubtedly, at the beginning of the move from institution to community, large group homes were seen as a huge step forward. However, by 1985 experience was indicating that such homes failed to provide the privacy, sense of ownership and quality of community experience that was possible in smaller settings. Furthermore, the complexity of needs presented by individuals made large groupings disadvantageous. Visits to British Columbia, Newfoundland and Ontario quickly convinced RRSS (and subsequently government) that smaller living arrangements were preferable and in 1985 DCS asked RRSS to open its first small option homes. In summary, not only have group homes developed to their full potential, they have outlived their place in the support continuum.
4. Reports from earlier consultations
Several participants in the RRSS consultation groups asked whether reports were available from the focus groups and meetings held by DCS with consumers, community organizations, advocacy groups and service providers. We are passing on this request in the hope that such information will be made available to us.
In Conclusion:
There is no question that renewal of support systems for individuals with disabilities is badly needed in Nova Scotia and we commend DCS for its efforts in this direction. During our consultations one person stated “This report has the potential for some significant negative impact on people and I'm quite concerned”. This was a prevailing view throughout our discussions with family, staff and board members.
Having said this, the single most important step was taken by DCS when it initiated the Renewal Process and invited community responses to the Discussion Paper. We trust that the Dept. of Community Services will use this submission, and others, to further improve on this very important initiative. The board, staff and families of RRSS stand at the ready to work collaboratively with government toward enhanced supports for all Nova Scotians with disabilities.
Respectfully Submitted
Board of Directors
Regional Residential
Services Society (RRSS)
