Hamilton's Respite Plan for Children and Youth with Autism by omf20943

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									                            HAMILTON




            Hamilton’s Respite Plan for Children and Youth with
                        Autism Spectrum Disorder:

                                  Executive Summary
1.0    Introduction

Families of children and youth with Autism Spectrum Disorder (ASD) consistently identify respite
as the most needed service. Available respite services are generally not well suited to meet the
unique needs of children and youth with ASD. ASD respite services are defined as follows
(taken from the MCYS document “A Continuum of Respite Services for Children and Youth with
ASD”):
    - A break (or respite) from day to day care of a child/youth ages 0-17 with a diagnosis of
        ASD including autistic disorder (autism), pervasive developmental disorder not otherwise
        specified and Asperger’s Syndrome
    - A family support service that provides temporary relief from the physical and emotional
        demands involved in caring for a chid with ASD
    - The creation of greater opportunities for all family members to live actively and
        participate in community activities while allowing caregivers time for themselves and,
    - Services that allow children and youth with ASD to engage in meaningful and purposeful
        activities while promoting the continuity of skills and the development of new skills and
        relationships.

On August 17 2007, the Ministry of Children and Youth Services (MCYS) announced new
funding for respite on behalf of children and youth (ages birth to 17 years) with Autism Spectrum
Disorder (ASD). The Hamilton/Niagara Regional Office asked Contact Hamilton to facilitate a
local community planning process that would develop a plan with respect to the new resources.
Plans must be based on local priorities that build upon and/or expand respite service capacity
for children and youth with ASD.

The Hamilton community’s allocation for the 2007/2008 fiscal year is $150,101; Hamilton’s
annualized funding is $300,243. This funding represents a large investment in respite services
for children and youth with ASD and an opportunity to effect positive change in the lives of
children, youth and their families. The Hamilton community is very pleased to have had the
opportunity to plan for respite services for children and youth with ASD. The plan put forward by
the Hamilton community was achieved through consensus and represents a spectrum of respite
services for children and youth with ASD of all abilities.

The Executive Summary contains the following:
   - Overview of Hamilton’s Planning Process
   - Identification of Gaps in Service for Children and Youth with ASD – Key Findings
   - Strengths of the Hamilton Community
   - Hamilton’s Plan - Recommendations to the Regional Office
   - Eligibility for ASD Respite Services
   - Conclusion


September 6, 2007
2.0    Overview of Hamilton’s Process

On August 23 2007, the Hamilton / Niagara Regional Office hosted a regional meeting and
launched the ASD respite initiative. At the meeting, the Regional Office announced that county-
specific plans would need to be submitted to the Regional Office by September 6, 2007.
Contact Hamilton was asked to facilitate a community process that would develop Hamilton’s
respite plan for children and youth with ASD.

On August 29 2007, Contact Hamilton met with developmental service providers and children’s
respite providers (Hamilton’s community planning table) and presented a planning process.
That planning process was unanimously accepted. Key elements of the planning process
included:
    - Planning givens as articulated by the MCYS
    - Identification of key gaps in service for children and youth with ASD
    - Presentation of respite ideas by service providers
    - Use of the MCYS standardized proposal template
    - Review of proposals by Hamilton’s community planning table
    - The community planning table would choose the proposal(s) for submission to the
        Regional Office
    - Decision making by consensus, and if consensus could not be attained, a recorded vote
        (one vote per agency)
    - Agencies submitting proposals cannot vote on their own proposals

Hamilton’s community planning table met twice. Meeting Summary Notes are available to the
MCYS upon request. The following agencies formed Hamilton’s community planning table for
this initiative:
    - Autism Ontario
    - Christian Horizons
    - CHOICES
    - Community Living Hamilton
    - Contact Hamilton (planning facilitator)
    - Extend-A-Family
    - Lynwood Hall Child and Family Centre
    - McMaster Children’s Hospital – ASD
    - McMaster Children’s Hospital - SSAH
    - Rygiel Supports for Community Living
    - Salvation Army Lawson Ministries
    - Woodview Manor

A representative from the Hamilton / Niagara Regional Office was present for the first meeting
and available by teleconference for the second meeting.

The plan put forward by the Hamilton community was achieved through consensus.

It is important to acknowledge the very short time frames (less than 3 weeks) the Hamilton
community had with respect to engaging in the planning process. While the process was as
complete, inclusive and transparent as possible given the time frames, the development of
partnerships and collaborations to its fullest extent was not achieved. This is unfortunate given
the Hamilton community’s rich history in this regard. Despite this challenge, Hamilton’s
community planning table is proud of its efforts and believes that the plan put forward to the



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Regional Office is solid, reflects the needs of our community and broadens the spectrum of
respite supports available to children and youth with ASD.


3.0       Identification of Gaps – Key Findings

The community-planning table reflected on the survey feedback provided by the Regional Office
regarding parents’ impressions of gaps and needs with respect to respite services for their
children with ASD. While this feedback is very important and insightful, the survey feedback
was limited to families whose children were supported through certain agencies; broader
representation of families with children with ASD was missing.

The community-planning table identified the following gaps with respect to respite services for
children and youth with ASD (many of these themes were also voiced by parents):

      -   Reduction in SSAH funding over the years has “watered down” respite for families
             o Not enough hours; “everyone gets something” versus families getting what they
                need
             o Rate of pay for SSAH workers is not reflective of the skills required to support
                children and youth with ASD that have significant needs; children and youth with
                ASD often require more skilled workers who in turn require a higher rate of
                remuneration – this results in families of children with high needs getting less
                respite than families whose children do not have significant needs
             o It can be difficult finding skilled workers

      -   Limited respite options for all children due to lack of funding.

      -   Need for increased frequency, consistency and predictability regarding respite care.

      -   Children and youth with high behavioural needs may not be able to take advantage of
          typical respite options; agencies may not have sufficient staffing resources or staff may
          not have the skills necessary to work with children and youth with significant needs with
          ASD.

      -   Children and youth with ASD that do not have a developmental disability (e.g. I.Q. over
          70) are generally excluded from the developmental services system because they are
          not eligible for service; some children and youth with ASD also do not identify
          themselves as having a developmental disability.

      -   Training will enhance agencies’ ability to support children and youth with autism.
          Agencies can connect with the Autism School Support program, as resources are
          available. Having said this, the Autism School Support Program may not, in itself, be
          able to deliver every element of training that is required. The Hamilton community is a
          leader with respect to ASD research; it can better organize the expertise already
          available.

      -   Before school care, after school care, summer programs, camps and respite during non-
          school times (Christmas, March Break) are areas of need for families.

      -   There are physical space issues as it relates to out of home respite; resources may be
          available (e.g. funding) but there is limited space in which to provide the service.


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      -   Need to recognize the changing face of the “family”; there are many more single parent
          led families than in the past. Need to consider the impact respite has on parents’ ability
          to work and provide for their families.

      -   Need to recognize the changing face of our community; immigrant families; language
          and cultural needs.

      -   Transportation issues
             o Lack of transportation support
             o Need to consider time spent in transit
             o E.g. An agency may be able to support children and youth during the week but
                the Boards of Education are not always able to transport the children/youth to the
                agency (may fall outside the school’s catchment area)

      -   Children and youth need friends, not just paid support. Need to find a way to support
          this.


4.0       Strengths of the Hamilton Community

The Hamilton community has a long and rich history of partnership and collaboration within the
developmental services and children’s sectors as well as outside. While time did not permit for
the development of outside collaborations and partnerships to the extent possible, the
Hamilton community is dedicated to the spirit of collaboration and will take every opportunity to
develop these within the ASD respite initiative over time. To date the following “outside”
organizations have been either actively involved in this initiative or will be approached over time:
Autism Ontario, McMaster University, ASD School Support Team and the Offord Centre. Other
partnerships and collaborations will be explored over time as appropriate.

In addition, the agencies whose proposals form Hamilton’s respite plan, have their own
longstanding working relationships with other community partners, both within and outside of the
MCSS and MCYS funded systems. These partnerships will continue and have the potential to
be enhanced over time.

The Hamilton community is a leader with respect to research in the areas of ASD and children’s
mental health notably through McMaster University, McMaster Children’s Hospital and the
Offord Centre. As indicated in the paragraph above, connections with these institutions will be
made / enhanced.

The Hamilton community has a long and proud history of respite service provision. Hamilton
currently provides a range of quality respite options for children and youth including in-home,
out of home, overnight respite, day respite, family-based, group-home based, summer camps
and non-school holidays like March Break. This new ASD respite initiative will enable the
Hamilton community to increase the number and types of respite supports offered as well as
create new opportunities for children, youth and their families.


5.0       Hamilton’s Plan – Recommendations to the Regional Office




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In total, seven proposals were reviewed and vetted by the community-planning table. The
MCYS proposal selection criteria were applied against all of the proposals to the extent
possible. Based on this review, the five proposals listed below were endorsed by the Hamilton
planning table for recommendation to the Regional Office (full proposals are enclosed with this
package). Four of the proposals relate to direct respite service provision; one of the proposals
is specific to training and evaluation.

It is very important to note here that ALL submitted proposals had merit and would have been
recommended to the Regional Office had there been sufficient funding. Should additional
funding be available to the Hamilton community within this initiative, the community is well
positioned to plan.

A summary of the 5 recommended proposals follows:

Agency              Key Plan Elements                                   Projected        Cost
                                                                        Targets
Woodview            Enhancement of 4 programs                           Minimum 42       $108,000
                    Creation of 5 new programs                          children and     annualized
                                                                        youth
                    Target groups: children and youth ages 7 – 17                        $54,000 fiscal
                    with “moderate and high functioning” ASD

                    -   Planned respite
                    -   Out of home respite: overnight and day
                        (after school, weekends, March Break,
                        Christmas, camps and mini camps)
                    -   Group-based
                    -   Programming is based on ASD research

Community Living    Enhancement of respite support offered through      22     –    30   $121,243
Hamilton            the Charlton Respite Program                        children   and   annualized
                                                                        youth
                    Target groups: children and youth ages 6 – 17                        $60,622 fiscal
                    with ASD; can support children younger than 6
                    where required

                    -   Planned and emergency respite
                    -   Out of home respite: overnight and day
                        (weekday,     weekends,       March    Break,
                        Christmas and PA days when able)
                    -   Group-based and individualized
                    -   Open Charlton House throughout the week;
                        offer Dragonfly Lodge as appropriate
                    -   Includes cost of transportation as required




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Extend-A-Family   Creation of teen and pre-teen day respite          4 events per    $26,000
                  opportunities                                      month at a      annualized
                                                                     maximum of
                  Target groups: teens (13 – 17 years) and pre-      10 youth per    $13,000 fiscal
                  teens (8 – 12 years) with “moderate to high        event
                  functioning” ASD

                  -   Planned respite
                  -   Out of home respite: day respite (throughout
                      the month and including Christmas and
                      March Break)
                  -   Group based

Autism Ontario    Enhancement of Winner’s Circle Camp                32   summer     $16,000
                  Creation of Christmas and March Break Camps        campers         annualized

                  Target: children (5 – 12 years) with ASD and       16     March    $8,000 fiscal
                  significant behavioural issues that cannot be      Break     and
                  otherwise supported in existing day camp           Christmas
                  programs offered throughout the City               campers

                  -  Planned respite
                  -  Out of home respite: day respite (camps
                     during the summer, Christmas and March
                     Break)
                  - Group based
                  ___________________________________                __________      __________

                  Training on Positive Behavioural Supports          50              $4,000
                                                                                     annualized
                  Target group: Staff of MCYS and MCSS funded
                  respite supports for children with ASD                             $2,000 fiscal

                  -   Training to be coordinated with McMaster
                      Children’s Hospital
                  -   Will enhance the capacity of existing
                      children’s respite providers to support
                      children and youth with ASD, thereby
                      increasing system capacity

McMaster          Development of ASD specific training and                           $25,000
Children’s        evaluation                                                         annualized
Hospital
                  Target group: MCYS and          MCSS     funded                    $12,500 fiscal
                  children’s respite providers

                  -   Full training and annual refreshers
                  -   Will enhance the capacity of existing
                      children’s respite providers to support
                      children and youth with ASD, thereby
                      increasing system capacity
                  -   Development and implementation of an
                      evaluation      tool    to    measure the
                      implementation and effectiveness of the
                      ASD respite initiatives



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A summary of the key features of the recommended respite proposals follows (excluding the
McMaster Children’s Hospital proposal):
   - All respite proposals are specific to children and youth with ASD
   - The focus of all recommended respite proposals include: respite provision to families;
     development and enhancement of social skills; development and enhancement of life
     skills; development and enhancement of recreational and leisure skills; community
     inclusion and opportunities to form friendships with other children and youth (their
     peers).
   - All respite proposals relate to out of home respite
   - While centre-based, all respite proposals support community inclusion
   - As a whole, the respite proposals:
          o Offer day and overnight respite options including weekdays, weekends, March
             Break, Christmas and school holidays (PA Days)
          o Cover the age range of 5 – 17 years with the capacity to support younger
             children in one of the programs as required
          o Cover the spectrum of “ability”, i.e. supports children and youth with ASD who
             have significant needs (e.g. behaviour) and those deemed “higher functioning”
          o Are primarily geared to planned respite, however, one of the proposals can
             support emergency respite
          o Incorporates the use not only of paid staff but some proposals also speak to
             volunteers, youth groups, peer facilitators

There was unanimous agreement that without appropriate and on-going ASD-specific training,
the respite supports identified above could not be realized to its fullest potential. In this regard,
Hamilton’s community planning table whole-heartily endorsed the training proposal put forward
by both McMaster Children’s Hospital (lead) and Autism Ontario as the foundation upon which
Hamilton’s ASD respite plan is built. McMaster Children’s Hospital and Autism Ontario have
agreed to partner with respect to the provision of training as identified in their proposals. Key
outcomes of the training proposals include:
    - Enhancing the capacity of the current children’s respite system to support children and
       youth with ASD thereby increasing system capacity as it relates to respite
    - Enhancing the quality of supports offered to children and youth with ASD
    - Enhancing workers’ abilities and feelings of satisfaction; building a skilled workforce;
       building core competencies that support this specialized field
    - Development of some standardized training specific to ASD
    - Enhancing the system’s ability to attract and retain workers
    - Enhancing / maximizing the use of SSAH and other in-home respite support by having
       skilled / qualified workers
    - Families’ experiencing higher levels of care
    - Offering annual refreshers (fosters a culture of ongoing learning and improvement)

There was also unanimous support for McMaster Children’s Hospital’s proposal as it relates to
the development and implementation of evaluation tools to support the ongoing review of the
ASD respite services recommended in Hamilton’s plan. A commitment to join forces with other
community partners (e.g. McMaster University and the Offord Centre) is a key feature.

Many of the proposed services can be operational beginning in October and November of this
year.




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Taken as a whole, Hamilton’s respite plan addresses the following gaps in respite services for
children and youth with ASD:
    - Supporting and maximizing in-home respite through ongoing training of SSAH workers
    - Addressing the ASD-specific training needs of the current children’s respite system
        thereby enhancing the system’s capacity to support children and youth with ASD
    - Offering out of home respite that is meaningful, i.e. builds skills, offers opportunities for
        making friends and socializing
    - Increased choice, frequency and consistency of respite services to families
    - Supporting children and youth with ASD regardless of “ability” (low, moderate, high)
    - Incorporating summer, March Break and Christmas break as part of the respite offerings
    - Maximizing the physical capacity already available in Hamilton (e.g. opening Charlton
        House during the week; using Dragonfly Lodge during the “off season”; Woodview
        partnering with other agencies regarding use of space; maximizing community outings
        with appropriate staffing levels)
    - In one of the proposals, transportation issues have been addressed


6.0    Eligibility for ASD Respite Services

Children and youth eligible for the ASD respite services identified in the recommended
proposals will have a confirmed ASD diagnosis, including Autism, PDD NOS and Asperger’s.

In it’s current role, Contact Hamilton is the single access point to children’s respite services. All
proposals identify Contact Hamilton as their single access point. As part of the single access
point function, Contact Hamilton will ensure that children referred to the ASD respite services
recommended in this proposal will have a confirmed ASD diagnosis.

Further discussion with the children’s respite system, including those services recommended in
this proposal, will occur following approval of this plan.


7.0    Conclusion

The Hamilton community is confident that key gaps in service for children and youth with ASD
have been addressed in this plan, recognizing that some gaps remain. This will continue to be
an area of focus for the children’s respite system.

Hamilton’s goal is to support families in caring for their children by strengthening respite
supports for children, youth and their families thereby addressing families’ needs for relief and
meaningful learning opportunities for their children. Many children and youth with ASD have
significant needs and their family/support networks are at higher risk of breakdown. Many
children and youth currently supported as “over-commitments” in Hamilton have a confirmed or
queried ASD diagnosis. In supporting families through consistent, predictable and quality respite
service provision, the Hamilton community strives to reduce the number of families of children
with ASD seeking more intensive and intrusive supports (e.g. full time accommodation support).

Despite the very short time frames, the Hamilton community is pleased to have had the
opportunity to develop a plan for the new ASD respite funding for children and youth. The
Hamilton community looks forward to hearing from the Regional Office regarding the outcome of
this plan in early October 2007.



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