The
Lives Of Families:
What You
Need To Know as a Professional Working with/for People with a Disability
and Their Families
Stress - it’s daily, constant,
continual, a feeling of being in crisis
Confused
- overwhelmed -exhausted - frustrated
*Acknowledge
this reality and serve families in a timely, respectful way*
The SSAH Program - Overview
● started in 1982 for children who have a
developmental disability
● 1990 for children with both developmental and/or physical disability, and adults who have a
developmental disability
● “ meeting needs broadly
described as: personal development and growth and/or family relief and
support”
● considered a program of “last
resort” – family to purchase supports and services not available
elsewhere in the community
● two MCSS Policy additions in
2005:
1) Eligibility for
SSAH funding expanded to include individuals who are not living at home
with their families and are not residing in ministry-funded residential accommodation.
2) Primary caregivers
can use SSAH funding to compensate
some family members to provide respite and/or personal development and
growth.
The
Fears Of Families About SSAH That You Need To Know
■ fear of
not filling out the application form properly, losing time;
■ fear of being pitted against
other families for funding;
■ fear of being approved for less
than what their child requires;
■ fear of being told to expect less
SSAH since their child is school-age;
■ fear of feeling they have to
portray their child negatively;
■ fear of being cut back in funding
without explanation;
■ fear of not knowing why the
amount requested is less than approved;
■ fear of being cut back when their
funds were not used up previously;
■ fear about lack of consistency in
evaluation of applications;
■ fear of losing SSAH workers,
especially without much notice;
■ fear of losing funding if their
child appears to be making progress; etc.
Examples
Of What Families Need From You
♦ Program access – make
families aware of the program’s existence and
its benefits. While 27,000+
families in
Ontario
receive SSAH funding, many eligible families have no idea it exists or
find out late.
♦ SSAH applications –
understand language to use, when to fill out a full/short application,
meeting deadlines, giving complete info, what can be purchased with
funding, compare SSAH goals with school
goals (e.g. child’s IEP), ensure proper Supporting
Documentation,calculate amount of funding to request, filling out Progress
Reports,
encourage and help with planning (e.g. circles). Ensure
that box “Person or Agency
Assisting in the completion of application” is filled out. Be mindful of additional needs at transitional stages
e.g. preschool-K, elementary-secondary esp. transition into high school
and post-secondary.
♦ Sources of Support –
connect with local and provincial groups for
ongoing support and information, inform families about workshops,
share resources regularly that teach about fostering diversity and
inclusion, individualized funding
approaches, etc.
♦ Worker issues – to find
good workers and figure out how to keep him, advertising for workers, how
to conduct an interview, worker wages (cope with what worker wishes to be
paid versus what family can afford), writing up a contract, etc. Ensure
families have the CHAP Family Info Package.
♦ Invoices --
how to fill out SSAH invoices, remind families that invoices can be
faxed to regional office, challenges of paying workers in advance and agency administering family’s SSAH funds.
♦ Appeals – understand the
appeal process available to them step-by-step, assist with letter-writing, attending meetings, follow-up,
etc. Ensure that new
info is submitted to be considered.
Some
Suggested Resources
SSAH
Provincial Coalition: http://www.ssahcoalition.ca to learn more
about SSAH, resources and connect with families.
Individualized Funding
Coalition for
Ontario
: http://www.individualizedfunding.ca to learn more about
individualized funding and supports that work.
SSAH is one form.
Family
Alliance
Ontario
: http://www.family-alliance.com
to locate regional family networks, resources and connect with families.
Toronto
Family Network: Contact
Coordinator Janis Jaffe-White (416-484-1536) for support and info about
SSAH, navigating the school system, etc.
“My Life, My
Choice” DVD about personal stories, struggles and successes in
Person-Directed Living available from http://www.inclusion.com/dvdmylife.html
Where Are the Parents?
By Sue Stuyvesant available from http://www.our-kids.org/Archives/Where_parents.html
Creating a Good Life
in Community: A Guide on Person-Directed Planning available from http://www.dsto.com/upload/Creating_a_Good_Life_in_the_Community_Guide.pdf
Al
Condeluci, an advocate and catalyst for building community capacities and
understanding culture: www.ucp.org/ucp_localsub.cfm/136/9495/9495/9495-10733
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Bloorview
Kids Rehab: http://bloorview.ca/webpdfs/ssahmain.pdf
for
the Special Services at Home Tip Sheet.
Bloorview holds SSAH workshops to assist with applying for
SSAH funding and managing SSAH funding.
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Respiteservices:
http://www.respiteservices.com for resources such as the
CHAP Family Package for families and/or individuals wishing to access SSAH,
hire workers, etc.
University
of
Toronto Career Centre
: http://www.careers.utoronto.ca to hire
workers by posting ads (free service to employers including parents).
Ministry of Social and Community Services:
http://www.children.gov.on.ca/CS/en/programs/SpecialNeeds/specialServicesatHome.htm
http://www.mcss.gov.on.ca/mcss/English/resources/directives/sash_policychange.htm
http://www.cdrcp.com/pdf/SSAHLETTERS05.pdf
(Policy Changes Memorandum)
Ministry of Education:
Transition Planning: A Resource Guide, 2002, available from
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http://www.edu.gov.on.ca/eng/general/elemsec/speced/transiti/transition.html
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Toronto Region SSAH
Family Advisory Committee – contact Co-Chair Janis Jaffe-White (jjaffewhite@yahoo.ca)
or MCSS Program Manager Maria
Farno, Assistance for Children with Severe
Disabilities and Special Services at Homes Programs (416-325-0637)
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