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:
- 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.
- 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://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
- 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.
- 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).
- http://www.cdrcp.com/pdf/SSAHLETTERS05.pdf (Policy Changes Memorandum)
- Ministry of Education: Transition Planning: A Resource Guide, 2002, available from
- Toronto Region SSAH Family Advisory Committee – contact Co-Chair Janis Jaffe-White (email@example.com) or MCSS Program Manager Maria Farno, Assistance for Children with Severe Disabilities and Special Services at Homes Programs (416-325-0637)