Disability White Paper Open Space Session January 15, 2014 Discussion Session Reports Creekside Community Centre Vancouver, BC Disability White Paper Open Space Discussion Session Reports Table of Contents INTRODUCTION 2 DISCUSSION SESSION REPORTS 3 BC WOULD HAVE LAW RESPECTING CIVIL RIGHTS 3 WHEN YOUR CIVIL RIGHTS ARE VIOLATED, YOU DON’T NEED A HUG, YOU NEED A LAWYER 5 EVERYONE WHO HAS A MENTAL ILLNESS RECEIVES TREATMENT, SUPPORT AND HOUSING 7 INDIVIDUALIZED FUNDING 9 HOUSING 12 GUIDE/ASSISTANCE DOG ACT 13 PRIVATE AND INDEPENDENT VOTING OPTIONS FOR PEOPLE IN BC 15 COMMUNITY ORGANIZATION TO BE HONOURED AND SUPPORTED BY GOVERNMENT AS PARTNERS 16 RECOGNITION & SUPPORT OF YOUTH & YOUNG ADULT PHYSICAL, MENTAL & INVISIBLE DISABILITIES 17 NO BARRIERS TO TRANSPORTATION 19 COMMUNITY LIVING FOR PERSONS WITH DISABILITIES 21 RAISE ASSISTANCE RATES 23 ACCESS TO FULLY INTEGRATED PERSONAL SUPPORT USING THE PARTICIPATION MODEL + CONTINUED SUPPORT FOR EATI 26 BETTER TRANSITION FROM PWD ASSISTANCE TO EMPLOYMENT 28 ADEQUATE HOME SUPPORT FOR COMMUNITY LIVING: NO INSTITUTIONS 30 K-12 EDUCATION IN BC PREPARES ALL STUDENTS FOR POST-SECONDARY MEANINGFUL CONTRIBUTION TO SOCIETY AND OPPORTUNITY TO ACQUIRE WEALTH AND TO BE A CONSUMER. 32 ASSUME EVERYONE HAS A DISABILITY 33 ENTREPRENEURSHIP AND SOCIAL VENTURES 34 INDIVIDUAL STATEMENT 36 OTHER TOPICS IDENTIFIED 37 PARTICIPANTS 40 1 Disability White Paper Open Space Discussion Session Reports Introduction The Disability White Paper Leadership Team invited members of the disability community to share their views about how we, as a society, could increase accessibility and decrease barriers for people living with disabilities in BC. On January 15, 2014, 100 participants came together at the Creekside Community Centre in Vancouver to participant in an Open Space Forum that gathered ideas in response to the following question: What would BC look like if it were the most progressive province for people living with disabilities? During the five-hour forum, participants identified over 40 ideas. In the time available, discussion groups were convened around 18 of these ideas. This document contains the results of those discussions as documented by the participants. It also provides a list of the topics that were not discussed and the names and organizations of the participants. The material developed during the Open Space session reflects the voice of British Columbians living with disabilities and will be a vital component in the development of the White Paper. 2 Disability White Paper Open Space Discussion Session Reports Discussion Session Reports Topic Name: BC would have law respecting civil rights Convener: David Marley Participants: 7 participants Description: What are the main idea, issue, and opportunity behind the topic? BC needs a law respecting civil rights Nothing will happen without a law! Ensuring charter, section 15 has practical force and effect in the lives of person with disabilities. A law like the ADA Act in the USA is necessary in Canada. Many people are unaware, apathetic, overwhelmed, not sure what to do. Many people believe that all of our rights are protected in Canada – of course this is not true Presently there are 2 two states that are trying to be passed o Community Care (Direct Payments) o The Civil Rights of Persons in Community Care Act There are many competing issues that affect people with disabilities. We are fighting for so many things that are very important to us, but without a law it is difficult to enforce our legal rights! If someone is abused they do not need a hug – they need a lawyer! There is no political will to embed ‘entitlement’ in the statute Discussion: What are the implications, benefits, potential challenges, time requirements etc. Political will is needed to develop law We need to start now! Need taxes to increase to fund action It needs teeth! Without a law it is hard to test the law. This is necessary when evoking change This topic should have had the most people in it because without a civil rights law we do not have protection and are at risk of not being treated fairly....everything discussed today will have a more positive impact if there was a law 3 Disability White Paper Open Space Discussion Session Reports This room should be filled with MLA’s and other politicians. This is an important meeting today and our representatives should be present! This presentation should be full with many people today – but there is a perfect storm brewing...many issues effecting people with disabilities e.g. lack of access to services and supports. Apathy amongst the general public, access to medical services in a timely manner, lack of real ‘individualize funding’ – people need real money to live in the community, lack of accessible housing and supports, no to institutions; many barriers to remove. Poverty decreased Recommendations and/or Next Steps – what needs to happen to make this a reality? Provincial Strategy is needed re. Empowering people to make changes (laws etc.) Organizing and uniting communities in working together to lobby for a law We need to raise the awareness issue, e.g. that there is an absence of legislation in Canada and how that impact effects us as citizens! Inviting MLAs and politicians to meetings and explaining the importance of why this meeting is important e.g. Civil Rights Now meetings Individuals with disabilities do have power, but often we are so busy advocating and fighting for our rights. We need to be educated and informed on how we can best make a difference Voter registration is decreasing, and politicians know that. Our vote does matter! Develop a provincial voting strategy across many different groups and domains on how we (individuals) can best affect change and work together in using our political influence. We can vote! 4 Disability White Paper Open Space Discussion Session Reports Topic Name: When Your Civil Rights are Violated, You Don’t Need a Hug, You Need a Lawyer Convener: Civil Rights Now! Participants: Paul Caune, Fiona Whittington-Walsh, Ross Chilton, Allison?, John? Description: What are the main idea, issue, and opportunity behind the topic? Disabled residents of B.C. are vulnerable to a provision of community or institutional care that falls bellow a generally acceptable standard, a situation that does not allow them to live with confidence in safety, with freedom and dignity. The main reason for this is the excessive amount of discretion available to government and contractors respecting the services provided to disabled people. Discussion: What are the implications, benefits, potential challenges, time requirements etc. The proposed Remedy: Two Statutes: the Community Care (Direct Payments) Act, and the Civil Rights of Persons in Community Care Act. The Community Care (Direct Payment) Act will provide access to portable, individualized funding for all disabled people, at their discretion, to us efor their own personal care. Once eligibility is confirmed, payments will be made directly to the disabled person or their representative from the Ministry of Finance. The Civil Rights of Persons in Community Care Act, which is to be administered by the Ministry of the Attorney General, is designed to enable investigations and possible civil action resulting from a breach of Charter Rights of disabled persons by government or contractors. Rationale: In B.C., people with disabilities living in community or institutional care are one of the most over-regulated and poorly served groups. The main reason for this situation is a long history of over-bearing bureaucracy that operates arbitrarily and without effective control and direction from our elected representatives. Ultimately this trend will only be reversed by “root and branch” reform of the administrative delivery model respecting the provision of services to persons with disabilities. Central to this issue is the determination of eligibility and entitlement. It’s here that excessive bureaucratic discretion can lead to arbitrary and undesired outcomes. Our proposed Community Care (Direct Payment) Act is a necessary first step in that it introduces an element of market discipline to the provision of these services. Our intent is that the person with the disability or their representative will be able to exercise 5 Disability White Paper Open Space Discussion Session Reports effective control and direction over service providers through the power of consumer choice. The original concept of the Ministry of Health’s CIL (Choices in Supported Independent Living) points in the right direction. However, since delivery was made the responsibility of unaccountable regional health authorities this program appears to have been undermined. Another example of bureaucratic overreach can be seen in the decision, made in November, 2009, by the Ministry of Children and Families to cancel direct payment to parents of autistic children respecting the provision of treatment funding. Community Care (Direct Payment) Act implementation: One of the major hurdles to implementing any individualized funding in B.C. has been bureaucratic resistance. Therefore the success of implementing the Community Care (Direct Payments) Act will be in the details. In order to encourage up-take we recommend the following: The program must be promoted, made understandable and easy to use The application process must be straight-forward There must be financial incentives to encourage use Our proposed Civil Rights of Persons in Community Care Act is intended to meet the challenge of there being “no right without a remedy”. We believe it will provide the provincial government with a citizen-initiated legal tool to enforce and uphold an appropriate standard of care for all people with disabilities living in B.C. We believe that these complimentary statutes will provide an effective legal foundation for persons with disabilities to gain access to some of the same rights as currently enjoyed by other British Columbians. Recommendations and/or Next Steps – what needs to happen to make this a reality? Please see above. 6 Disability White Paper Open Space Discussion Session Reports Topic Name: Everyone who has a mental illness receives treatment, support and housing Convener: Sally Hull (and Celina Jeves) Participants: Description: What are the main idea, issue, and opportunity behind the topic? Discussion: What are the implications, benefits, potential challenges, time requirements etc. Recommendations and/or Next Steps – what needs to happen to make this a reality? Access to treatment More mental health teams More funding for services and treatment Changing the service MSDSI service model – current model creates barriers (toll free #, loss of individual EAWs, online app, etc.) Transparency and accessibility of MSDSI policy Mental illness is not a recognized disability (invisible and overlooked. Supports tend to skew towards physical disabilities) Benefits and supports do not match the need of individuals, and particularly those with MH issues No services for people that cannot tolerate waiting, being in office, talking on phone due to MH symptoms Need to avoid crisis situations (self-harm, serious health crisis, loss of housing, etc.) deal with issues on a more proactive basis; reduce wait times; easier access On demand services Create preventative measures for $ admin (right now, only available if history of mismanagement even if requested) How can people with MH feel normal? choice (targeted services are great, but also leads to pigeon holing) Safe home and community for those with severe mental illness 7 Disability White Paper Open Space Discussion Session Reports People are forced into a very negative box to access services and then have to crawl their way out (and stay out because crawling out may risk loss of benefits). For example, all eligibility is determined by what they cannot do for themselves not a model that encourages self-sufficiency Lack of affordable, secure housing EPI program is a model that works but if being eroded throughout the province Medication PLUS PLUS PLUS nutrition, exercise, social, etc. (get away from reactive, medication-focused treatment) Person who is ill needs an advocate Individualized treatment program where the wishes of the ill person are respected Create a “both/and” culture instead of an “either/or” culture PWD dental policy needs revision people are forced to have teeth pulled instead of proactive treatment (fees not high enough, and default should not be removing teeth) 8 Disability White Paper Open Space Discussion Session Reports Topic Name: Individualized Funding Convener: Susan Participants: Description: What are the main idea, issue, and opportunity behind the topic? Pro Individualized funding for the citizens of BC All individuals should have access to adequate and appropriate income and supports to meet their needs and live a good quality of life Individualized funding for AIDS, housing, home support, income assistance, equipment and devices Discussion: What are the implications, benefits, potential challenges, time requirements etc. Participation model is more purpose driven If you’re living on a survival income, you are really included in society Very expensive to stay in hospital beds whereas 24 hour care provided in the home would be more cost-effected and more desirable to the individual – but often not available. Health authorities are no accountable to people Some persons with disabilities do not have access to any funding for example, if you are employed you cannot get funding for a hearing aid unless you are a BCEA client or unless you have your employer submit a letter stating that you will be fired if you don’t get a hearing aid. NDP government used to provide hearing aids for employed people EATI is a good model organization because it’s participation based (although you cannot access EATI unless you are low-skilled or un-employed) and you are given a super-navigator to help you through the process CSIL should be offered to all in need PWD live in fear that their living supports will be reduced each year (in reference to CLBC and CSIL) CSIL is home care based on personal care needs (this is the preferred model) Services that are good models but have been taken away: EATI, Giving in Action Transition into adulthood and/or onto federal benefits is difficult. One person says: “Disabled is disabled for life. I don’t become able bodied when I turn 65.” Service is discriminatory based upon age. 9 Disability White Paper Open Space Discussion Session Reports Stop funding bureaucrats, bureaucracy is sucking the system dry Tension between health authority and CLBC Everyone has their own lengthy assessments (and they don’t share info) When I move to a new jurisdiction within BC I have lose funding because the funding is not available in the new area (home care, community supports) Current funding is piecemeal and uncoordinated What is the goal of government? provide service or save money? Being 3rd party administered has lessened the access to service. 3rd party administration has gone on for 4 years. Unable to access funding for a scooter, unable to access assistance for loss of hydro. Lack of advocacy in the Fraser Region. The best advocacy was the British Columbia Aboriginals Society. Aboriginal people feel that they are disabled in the eyes of the ministry just by virtue of being aboriginal Recognize that if you have a disability you don’t have the energy to fight the system The proposed Remedy: Individualized funding should include all ministries and should be applied to all services Consumers should have control over their services Services should be portable across the province and across provinces Lessen restrictions to getting funding Move away from medical model assessments and move towards functional assessments More streamlined supports between ministries Funding should be distributed through a needs based, participatory or social model Allow people to find purpose Person centred support rather than service provider centred supports Funding should be adequate for inclusive living not just enough to survive Take funding out of the hands of the bureaucrats and put it in the hands of the volunteers (there needs to be competition for the funding in order to drive down the costs and increase the quality) Disability should be taken out of the ministry Recruit hosting agencies to help people navigate the resources Re-allocation of funds – from hospital funding to community based supports Personal supports should be optional (not forced as is sometimes the case with CLBC) Create mini, community based hospitals 10 Disability White Paper Open Space Discussion Session Reports Integrate services so that people do not have to deal with multiple orgs who are often at odds with each other or even combative with each other One assessment for all Government One set of rules across the board Government should undertake an effort to bring down the silos and eliminate duplication of service. Eliminate multiple assessments Call upon the auditor general to do a mass audit of all ministries in order to discover where money is being wasted. This may help to create more ‘allies’ in the endeavour towards improving services for pwd. More housing subsidies for people with disabilities to broaden the scope of housing options. This may also encourage developers to build accessible housing if there are more pwds who can afford higher rent More advocacy for aboriginal people Build more accessible gyms for people with disabilities – could be a social venture Rationale: Individualized funding is cost effective because people are only accessing what they need It’s inefficient to have to multiple agencies due multiple assessments of the same thing It’s destabilizing to move from one area to another and lose vital supports See above for more rationale Recommendations and/or Next Steps – what needs to happen to make this a reality? 11 Disability White Paper Open Space Discussion Session Reports Topic Name: Housing Convener: Lynda Barnett Participants: Chris Mc Bride- Spinal Cord Injury BC, Jill Weiss – City of Vancouver Persons with Disabilities Advisory Committee, Ana Maria Bustamante – Gordon Neighborhood House, Karen Williams, Sparc BC, Tim Cottrell- Ministry of Social Development, Terry Leblanc - and Duane Geddes – Sam Sullivan Foundation Description: What are the main idea, issue, and opportunity behind the topic? Housing should be usable and visit-able by all people of ages and abilities. There should be some mechanism to make rental housing affordable and adaptable to people with disabilities. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Huge benefit because everyone would be able to live independently in appropriate housing in the community. Also, everyone will be included in the community because everyone would be able to visit anyone else and not be isolated. The cost implications are minimal. This has been in place in England for 15 years and the cost is negligible. Recommendations and/or Next Steps – what needs to happen to make this a reality? 1. The province adopts the city of Vancouver adaptable housing bylaw for the whole province with the addition of one accessible path to one entrance of all new dwellings. 2. The province should require at least 5% of new housing to be fully wheel chair accessible. 3. The province should have a housing subsidy available to all people with disabilities to ensure housing is affordable. The province should adopt CMHC flex housing standard that can be adopted by cities and municipalities throughout BC if they wish. 12 Disability White Paper Open Space Discussion Session Reports Topic Name: Guide/Assistance Dog Act Convener: Louise Gaudry Participants: Rob Sleath; Jane Dyson; Henry Stuive; Sarah Khan Description: What are the main idea, issue, and opportunity behind the topic? To have new legislation implemented governing the use of guide dogs/assistance dogs. Discussion: What are the implications, benefits, potential challenges, time requirements etc. New guide dog/assistance dog legislation. Benefits: people who use guide/assistance dog have better access rights Challenges: Government must have the political will to change the legislation Time requirements? Recommendations and/or Next Steps – what needs to happen to make this a reality? 1. Current legislation is decades old and the weakest in Canada. Access rights (public and housing) are extremely weak. 2. Community organizations (for example, CNIB, BCCPD, PADS, Access for Sight Impaired Consumers) have been urging the government to pass new legislation for over 15 years. 3. Current Act has virtually no provisions for fines. $200 is the maximum amount. 4. There is no recourse when a guide dog/assistance dog is injured by another dog or person. 5. There are no access rights for puppies in training. 6. Only real recourse for violation is human rights code. 7. Needs to be more education for business and the general public about the use of working dogs. 8. Province needs to increase the amount it provides to PWD recipients for a dog’s care. 9. In 2012 a draft act (The Guide and Assistance Dog Act (GADA)) was submitted to the government by: BCCPD; CNIB; Access for Sight Impaired Consumers; Alliance for Equality for Blind Canadians; Pacific Assistance Dogs, BC Guide Dogs and PAWS for Independence Assistance. It includes provisions for an increase of fines 13 Disability White Paper Open Space Discussion Session Reports regarding access; injury to working dogs, provisions covering puppies in training; and broadens access rights with respect to housing. 10. The Province of Alberta is currently revamping its Guide Dog legislation and is using parts of GADA. 11. The BC government was reviewing GADA very favourably in 2012 and had made some commitment towards implementation, but there has been no progress. 12. We urge the government to start working on the implementation of GADA. Related issue: Many people with disabilities and seniors depend on a dog/cat for their emotional wellbeing. It is tragic for them and emotionally debilitating when they are forced to surrender a pet in order to access housing. Participants in the group would like to see amendments made to the Residential Tenancy Act so that if an individual has the support of a healthcare professional who states they need a pet for their mental well-being they cannot be denied housing, so long as it does not cause undue hardship. We understand that in Ontario a landlord cannot deny someone housing if they have a pet. 14 Disability White Paper Open Space Discussion Session Reports Topic Name: Private and independent voting options for people in BC Convener: Rob S. Participants: Rob S. (Heather C as scribe) Description: What is the main idea, issue, opportunity behind the topic? The importance of providing the opportunity for people with disabilities, vision loss, limited mobility, gross motor problems to have access to independent and private voting in BC. Impacts anyone who has to rely on the assistance of others to vote. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Under the Charter of Rights and Freedoms, an eligible voter is entitled to vote in secrecy and privately. An eligible voter should also be eligible to vote independently. Many people who require assistance must rely on someone else (e.g., electoral officer) to confirm that ballot is filled out correctly, which is not private or secret. Internet voting has been used in Ontario by-elections and in New Brunswick. The Liberal party also used Internet voting during the leadership election. Keith Archer, Chief Electoral Officer of BC, conducted an independent panel on Internet voting and found that too many issues did not allow the voter to vote privately. Recommendations and/or Next Steps – what needs to happen to make this a reality? 1. Allow internet voting in BC. Run a pilot of persons with disabilities in BC. Should make it available to any individual who wants to try it. It could be done on a trial basis with a select group. 2. If Internet voting not an option, should allow voting by phone. 3. Why can’t we ask elections BC to use the other technology out there, such as ballot marking technology (i.e., “auto-mark balloting system”). Rob has used this in an election. It can be used by people with vision loss, quadriplegics who use a sip and puff chair, and braille users. It is totally independent and private. Ballot is fed into a ballot machine which allows the user to independently verify his or her own ballot prior to submitting. It will benefit people with fine motor skill problems and mobility issues. Would be possible to use only in advance voting – which would also cut down on costs. If people are provided with a secret, private, independent form of voting, they would likely be willing to attend the advance voting stations. 15 Disability White Paper Open Space Discussion Session Reports Topic Name: Community organization to be honoured and supported by government as partners Convener: Faith Bodnar Participants: 20+ Description: What is the main idea, issue, opportunity behind the topic? Community based organizations (CBO’s) are the backbone of community. Governments must value the role of CBO’s in community development and engagement. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Procurement model is inappropriate for this work. It pits organizations against each other, uses cost as the only outcome measure. CBO’s are able to personalize service to individuals Gov’t needs to recognize its responsible to meet all the needs of people, holistic approach over the entire lifespan as they are supported by CBO’s Not all things of value can be measured as units of service. Need to respect long term nature of CBO’s work Recommendations and/or Next Steps – what needs to happen to make this a reality? 1. Government needs to learn how to macro manage rather than micro manage its relationship with CBO’s. 2. Governments need to fund sustainable CBO’s to support community (long-term, ongoing funding/relationships, incl. investment opportunities). 3. Policy development must include CBO’s because they have lived experience. 4. Measure of CBO effectiveness must include outcomes from perspective of people receiving services. 16 Disability White Paper Open Space Discussion Session Reports Topic Name: Recognition & Support of Youth & Young Adult Physical, Mental & Invisible Disabilities Convener: Vikram Bubber Participants: Carolyn & Wilfred Vacheresse, Jane Blaine, Susan W. Description: What are the main idea, issue, and opportunity behind the topic? We need ongoing and age-appropriate full-time or temporary support for youth & young adults with disabilities, especially “invisible” disabilities. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Currently there is a lack of communication and collaboration between the various government departments, especially when children become adults. More seamless transitions are needed. By continually supporting the youth and young adults with disabilities, we can provide more efficient and better all round service. Individualized and age-appropriate services with vocational support will allow the said population to gain employment & education therefore contributing towards the economy. The duration of such support should be catered to the individual’s needs. Everyone will have different “disabilities” and each will need specific types of support. Facilitate the education of potential employers and co-workers of specific issues of people’s needs. Affected individuals should have the right and opportunity to disclose and inform what their specific needs are. Invisible disabilities need to be recognized as legitimate disabilities such as those of adult survivors of childhood and adolescent cancers. Invisible disabilities include hearing loss, infertility, and cardiovascular and other mental effects of cancer treatment. Recommendations and/or Next Steps – what needs to happen to make this a reality? Increase communication and collaboration between different agencies and government departments. Continuous support of individuals from early youth through to mature adulthood. Begin creation of more individualized vocational and educational services. 17 Disability White Paper Open Space Discussion Session Reports Begin awareness campaigns and educational workshops for employers and coworkers. Education of disabled individuals about their rights Invisible disabilities need be recognized as legitimate disabilities. There’s no one solution to any of these issues 18 Disability White Paper Open Space Discussion Session Reports Topic Name: No Barriers to Transportation Convener: Suzan Jennings & Vanessa E. Participants: Linda, Sheila, Gary, Vanessa, John, Karen, Laura, Asia, Michelle, Isabelle Description: What are the main idea, issue, and opportunity behind the topic? Transportation for people living with disabilities should be: Accessible, Affordable, Which allows for spontaneity and quality of life. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Door through door instead of door to door transportation Handy Dart—disabled need to be coded #99 (hand-off) Another style of small bus- lower floor level to allow easier access, and sedan cars. Train all taxi drivers in accessible issues—the Vancouver Taxi Driver Training Manual BC Ferries need to have more dedicated staff to assist those in wheelchair transfers to and from the vessels Cars—give $1,700 mileage allotments, should be maintenance allotment Encourage going green with more consistent bus/car policy SPARC—bring back “no pay” decal for parking provide tier system of funding and income Blind: o Get a free bus passes that work on handy Dart o Handi-card o U pass o CNIB pass Handy Dart— o is subscription heavy, there needs to be more option available, including cross boundary and same across the Province. o More flexibility to cover school and employment times o Weather is an issue—need adaptable equipment. 19 Disability White Paper Open Space Discussion Session Reports Greyhound and cross-country buses—check on ordering accessible buses with 48 hour’s notice. Attendant caregiver travels free? Air Travel attendant travel covered for taxes only? o WestJet, if you have once traveled with an attendant, you can never again travel alone. o Air Canada allows flexibility Bus Signage needs to be designed to allow sight impaired to find and identify. Public transport needs to be better signed, with phones for assistance and more accessible washrooms with elevators. Recommendations and/or Next Steps – what needs to happen to make this a reality? All transportation for people with disabilities needs to be accessible, affordable which allows for spontaneous travel and quality of life. 20 Disability White Paper Open Space Discussion Session Reports Topic Name: Community living for persons with disabilities Convener: Jerry L. Participants: Jerry L. & Heather C as scribe Description: What is the main idea, issue, opportunity behind the topic? Providing / creating a place of communal-type living (in an apartment complex) for persons with disabilities that provides support but also allows for independence. Building a welcoming, inclusive community where everybody feels like they belong. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Currently, many people with disabilities have to reside with family members to receive support and they lack independence. Families also must work hard to build communities to support the person and this can be difficult to do. Communal type housing is common for the elderly – they reside within their own apartment within a larger complex housing elderly people. They have their independence (i.e., their own physical space), but they also benefit from close proximity of people with similar needs and this builds communities. The people in the complex are there to check in on one another and to provide support and friendship in times of need. For example, if the power goes out in a storm, the community checks in on its members. Why can’t the kind of community living that exists for the elderly also exist for people with disabilities? Such a community could be comprised of a mix of elderly individuals and people with disabilities, since some of their needs are similar: companionship, a sense of belonging, have their needs met, support from others, someone to check in on them. People would like such a mix of people in one space. A community living environment would require a completely accessible living space with all of the necessary personal supports, aids and devices to accommodate the specific needs of the residents – i.e., elevators, stair lifts, bed lifts, bath chairs, etc. They have access to whatever will make life easier. Recommendations and/or Next Steps – what needs to happen to make this a reality? Money – needs funding (i.e., people with money and an interest in the issue) Land to build on or an existing property that could be used for housing. 21 Disability White Paper Open Space Discussion Session Reports People interested in living in such a community. There is interest out there! People in Mission are already talking about how to build and support a community living environment. 22 Disability White Paper Open Space Discussion Session Reports Topic Name: Raise Assistance Rates Convener: Valerie Participants: Description: What are the main idea, issue, and opportunity behind the topic? Rates for disability assistance are woefully inadequate. It will not be possible to put many of the other ideas being raised in this consultation into practice without raising assistance to a livable amount. People need enough money to meet minimum needs in order to access all other supports, services, etc. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Issues Cuts to bottled water supplement (part of MNS) Harder to get nutritional supplement (shouldn’t be weight-based, or subject to other conditions—high cholesterol from cheap food, need better food); leads to other social costs All need enough to get healthy food (proactive solutions) People use benefits to pay rent (shelter amount is inadequate), then do not have enough to afford food Couples lose out because of Ministry assumptions about co-habitation Inflation considered in relation to everything else (i.e., allowable rent increases) but not assistance rates Shelter rates are inadequate o Even if it is cheaper elsewhere, there are fewer services in rural areas (and rural areas are still expensive Inadequate support forces people into bad situations (i.e., fraud, abusive relationships) Spouse definition is broad, so benefits are lost when someone finds a significant other o People commit “fraud” or avoid relationships o End up living in fear Other provinces have significantly higher rates (e.g., Alberta) 23 Disability White Paper Open Space Discussion Session Reports Repayable security deposits subsequently lower benefits; people are fearful to ask about deductions Housing available at $375 is substandard Despite other reforms, lack of inflation increases gets you further behind; give up trying things Earnings exemption does not help most people (only about 14% use it at all) o Also, there are no resources to help people take advantage of earnings exemption (i.e., money for clothes, transportation, phone, etc) Province needs to do more to encourage people to hire folks with disabilities (education for employers) Rates need to be tied to a calculation of actual cost of living (poverty line, market basket measure, etc)—why are people on PWD and income assistance so far below that? Irrational to have such a jump between PWD and OAS/GIS Homecare services: cuts lead to decreased standard of living (health costs, dignity costs); end up costing medical system more Ministries should talk to each other about a global picture of costs MSDSI fees do not cover medical services (physio, chiro, etc); people end up supplementing these costs with their fixed income Government needs to think long term (and about prevention) rather than short term Kids can’t learn without adequate food, etc Social costs: no $ for entertainment, eating out, etc, means decrease in quality of life and community involvement Family caregivers denied funding as homecare service Aboriginal people are leaving BC for fear of child support clawback Low rates make people feel like the government thinks people with disabilities deserve less (impact on dignity, role as parents, etc) Recommendations and/or Next Steps – what needs to happen to make this a reality? Cost of living quantified to set rates in a rational way Want government employees income to be PWD income Raise PWD to $1200/month Rent subsidies additional Reinstate CVS program; opportunity for community engagement and extra $ Think and set policy and rates with a mind to long term (prevention) 24 Disability White Paper Open Space Discussion Session Reports Chiro, physio, etc. covered properly would lead to lower health care costs in the long term o Increased coverage based on need Stop child support claw back General public actually supports a rate increase; this needs to be translated into political will Raise Christmas budget from $35 (currently sends message that we’re not even supposed to celebrate) Need to be treated with dignity and have enough to live with dignity PWD transit pass should be useable for HandyDart Shouldn’t have to fight for transit pass each year Cross-cultural/ability training for EAWs; specifically designated disability offices Accountability for MSDSI staff Better support for families with kids (education, part of society); kids become caregivers for PWD parents (lose independence) We need to look at the entire system (regular income assistance and PPMB as well); all part of the same system; people on temporary assistance have barriers too Small increases annually to gradually improve rates? (needs to be above inflation) Stop relying on NGOs, etc to make up the difference for people Increase asset levels 25 Disability White Paper Open Space Discussion Session Reports Topic Name: Access to Fully Integrated personal support using the Participation Model + Continued support for EATI Convener: Paul Gauthier (BC Personal Supports Network, BC Association for Individualized Supports for People with Disabilities) Participants: Fiona, Amy, Paul G. Christine G, Cindy Hayto, Terry Leblanc, + 2 others Description: What are the main idea, issue, and opportunity behind the topic? Personal supports are essential to full participation and the participation model is a made in BC person directed approach to the delivery of personal supports. The delivery of all personal supports in BC needs to be integrated under the vision, values and principles of the Participation Model. EATI has demonstrated that the Participation Model works and EATI needs to have a second generation that broadens access to the program while it pushes the Participation Model further as a tool for integration and person centeredness. Personal supports include: equipment and assistive technology, personal care, sign language interpretation, adapted transportation, technical training. Delays in acquiring personal supports deepens isolation and enhances disability. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Integrating personal supports in BC is essential and will serve to create a provincial program that currently does not exist. Using the participation model will ensure compliance with the UN Convention and give BC a leadership position in Canada. EATI has provided the groundwork upon which to build for greater integration, which needs to happen on both the community and the government side. It is essential to use the learning from EATI now so that momentum is not lost. Recommendations and/or Next Steps – what needs to happen to make this a reality? The integration process should proceed in the following way: A second generation EATI should be funded with both provincial and federal dollars to ensure more access to all people with disabilities who are experiencing functional barriers Individualized funding should be incorporated into the second generation EATI 26 Disability White Paper Open Space Discussion Session Reports EATI should become the front door for Work BC A pilot project should be established with Fraser Health Authority ( Burnaby) to test the participation model as the entry point for the CSIL program Co- payment or deductibles should be explored as a way to broaden access to a wider group of people with disabilities Consumer knowledge about personal supports needs to be encouraged through resource centres and websites 27 Disability White Paper Open Space Discussion Session Reports Topic Name: Better Transition from PWD Assistance to Employment Convener: Heather McCain Participants: Heather, Gary, David, Barbara Description: What are the main idea, issue, and opportunity behind the topic? In order to replace the benefits/support of PWD assistance, a recipient would need to secure a full time job earning $20/hour. There needs to be supports to help transition a person between being on assistance and earning above rates (i.e. continues housing subsidies, bus pass program) Discussion: What are the implications, benefits, potential challenges, time requirements etc. Issues: Current transitional programs are one size fits all Serious medical consequences of the stress associated with the transition Marginalized employees earning below poverty but not eligible for any supports – lose access to medical supplies and equipment Information from MSDSI is not clear, available in writing, accessible or consistent – shared caseload results in different answers for same question People are being forced out of employment due to lack of funding for equipment Persons with disabilities have to break through stigma of “can’t work” Employment programs don’t allow for investment in people or tailoring of supports Volunteering is not recognized as a necessary step to employment Technology and jobs change to quickly for employment aids to keep up By losing sight of the needs in pursuit to become more efficient, the process becomes more expensive and less efficient Gov’t funding new, innovative programs but established successful programs losing funding Not enough follow up ie Pathways Clubhouse’s TEP program Partnership between government and employers to share cost of employment was more detrimental to disabled employees who were seen as cheap labour and were frequently dismissed at end of probation 28 Disability White Paper Open Space Discussion Session Reports Recommendations and/or Next Steps – what needs to happen to make this a reality? Solutions: Individualized services Peer support Recognize that it is a long journey and support it Investing long term is will provide financial and economic growth Need to work with employers (education, training) to address stigma and comfort zones System has to recognize life long learning to address technology and job change Provide living wages Recognize and expand good programs, maintain funding Bring back the Community Volunteer Supplement program Create and use programs such as the Public Service training Build more affordable housing and floating subsidies More subsidies in rural communities Government needs to support subsidies in cooperative housing (i.e. 2020 changes) Step 1 to Employment: maintain disability supports – assistive technology, aids, transportation, housing Job development piece is inadequate: spend time on the worksite to achieve accommodation – educate, train Take a holistic approach Recognize invisible and episodic disabilities in the workplace Areas outside of Vancouver not as accepting – address this Accurate representation of persons with disabilities in the media – media fear mongers or often portrays PWD as hero or victim, nothing in between Increase community understanding/inclusion Review policies for catch 22s that become barriers to independence ie cannot get housing until receiving medication and cannot receive medication until you find a permanent residence 29 Disability White Paper Open Space Discussion Session Reports Topic Name: Adequate home support for community living: No institutions Convener: Jill Weiss Participants: Fiona Wittington-Walsh, Sociology Professor, Jerry Self advocate; Jeanette, Florence Flynn BC Social Workers Association, Jenny Kwan MLA, Debbie MS Society, Bonnie Klein, Tasia Alexis Developmental Disabilities Association, Chris McBride Spinal Cord Injury BC Description: What are the main idea, issue, and opportunity behind the topic? Province should re-organize its home support program to provide adequate support for all activities of daily life so that people with disabilities can live full lives in the community as mandated by the UN Convention on the Rights of Persons with Disabilities. Province should commit to no institutions, but instead support real community living. Discussion: What are the implications, benefits, potential challenges, time requirements etc. Benefits would be huge – people with disabilities could lead healthy full lives with the same range of choices as other people, the province would save money from not supporting expensive institutions and from not expending significant health care dollars for expensive acute health care interventions caused by inadequate community services. There is significant research that community living is less expensive and results in better health, community integration & connections, and higher quality of life. Recommendations and/or Next Steps – what needs to happen to make this a reality? 1. Reorganize home support a. Support for all activities of life including personal care, housework, meal preparation, shopping, work, education, recreation, families etc b. Adequate amounts of support for real life c. Fair province wide assessment: assessment process developed in conjunction with disability community d. Security of support – support can only be reduced for the legitimate reason that a person’s physical condition has improved e. Independent appeal mechanism – like that used for income appeals 30 Disability White Paper Open Space f. Discussion Session Reports Consumer choice & control for every client – choice of worker, choice to hire own workers if desired, choice of agency if desired; self directed support g. Where you live should not be based on your health care needs h. Really & properly implement “Better at Home” and “No decision about me without me” i. Individualized support plans and funding: better outcomes/lives, less expensive, less abuse because people in control 2. No institutions for people with disabilities in BC a. Mandated by UN Convention on the Rights of Persons with Disabilities b. Institutions have been ruled discrimination or deprivation of liberty by courts (US Supreme Court, EU Human Rights Court) c. Institutions have been shown to result in poorer quality of life d. Institutions have been shown to have significant abuse (BC Ombudsperson Reports, Amnesty International) e. Institutions are much more expensive than community living f. Institutions deprive people of their basic rights & freedoms 31 Disability White Paper Open Space Discussion Session Reports Topic Name: K-12 education in BC prepares all students for post-secondary meaningful contribution to society and opportunity to acquire wealth and to be a consumer. Convener: Jane Blaine Participants: Description: What are the main idea, issue, and opportunity behind the topic? That the public education system needs to better prepare all students, regardless of ability, for life as an adult in ways that respect the individual’s gifts and contributions. Discussion: What are the implications, benefits, potential challenges, time requirements etc. A major implication is that students with disabilities do not receive adequate education and life skill training during the school years. This often leads to adult lives that rely on paid supports, isolation and loneliness. Potential challenges are the current underfunding of services during the school year, inadequate training to teachers, large class sizes. Early work in the area of job preparation, transportation, transition planning will help to alleviate many of the negative outcomes currently facing students and alleviate the higher costs that will occur later in life – for all of society. Students who become consumers and who contribute in a meaningful way to society will build a better society. Recommendations and/or Next Steps – what needs to happen to make this a reality? Investment into teacher training, class supports now. Work with the universities and teachers college to strengthen the curriculum to include information on teaching to diversities. Engagement of families, community-based organizations, specialized teachers in order to identify solutions now. 32 Disability White Paper Open Space Discussion Session Reports Topic Name: Assume Everyone Has A Disability Convener: Daryl Participants: Amy, Karen, Faith, Melanie, Jay, +2 Description: What are the main idea, issue, and opportunity behind the topic? Looking at disability differently Meeting needs. Accommodating everyone. Looking at the use of labels Discussion: What are the implications, benefits, potential challenges, time requirements etc. More universal language Reduce isolation Reframing the language of disability (the deaf community did well) Recommendations and/or Next Steps – what needs to happen to make this a reality? Stay curious Ask questions How can I accommodate you Meet people where they are at. What “language do they speak? Get rid of the standards of how we measure disabilities PANEL DISSCUSSION – bring movements together. There are human rights issues. Diversity means strength. National Disability Act. Entrenched rights. Look at disability as a quality. 33 Disability White Paper Open Space Discussion Session Reports Topic Name: Entrepreneurship and Social Ventures Convener: Duane Geddes Participants: Ted Emes, Christa Mullaly, Claire Ireland, Ken Ireland, Vanessa ? Description: What are the main idea, issue, and opportunity behind the topic? Facilitation and support for social ventures – small (or eventually large) businesses owned and operated by non-profit societies. Discussion: What are the implications, benefits, potential challenges, time requirements etc. The government has made a commitment to improve access and reduce barriers for people with disabilities, but it has also made it clear that new money will not be provided. Rather, we need to think about how existing funds can be better utilized and how pressure can be reduced on future funding. Many non-profit organizations want to start thinking more like businesses with many have excellent ideas for social venture/enterprise. What they lack are the necessary financial resources (start-up capital and initial operating funds), business planning and marketing expertise. Successful businesses, operated by non-profits, can provide a stream of funding that can reduce demands on government coffers over time; funding that provides organizations with much more flexibility and freedom than typical government subsidies, grants and donations. The government must find a way to recognize the value inherent in social enterprise development and make it as easy as possible for societies to enter the world of business. Many examples of successful social enterprise operations already exist. For instance, the Elizabeth Fry Society is operating “Asphalt Gals,” a business recycling used asphalt shingles. This employs members (females exiting the prison system), provides working training and experience, and generates positive funding for the society. The Disability Foundation operates three such ventures: one being Martin 16 Sailing Inc., a company that markets and builds Martin 16 sailboats, which are used in disabled sailing programs around the world. Profits from this company support both the Disabled Sailing Association of BC and the AbleSail Network of Canada (a national organization that benefits all disabled sailing programs in this country). Social enterprises can have a single benefit – a revenue stream; they can have multiple benefits that can include training and work (often flexible hours, etc.) for people with disabilities in addition to a profit stream. he government has made a commitment to improve access and reduce barriers for people with disabilities, but it has also made it 34 Disability White Paper Open Space Discussion Session Reports clear that new money will not be provided. Rather, we need to think about how existing funds can be better utilized and how pressure can be reduced on future funding. The government must find a way to recognize the value inherent in social enterprise development and make it as easy as possible for societies to enter the world of business. The principal concept is this: Each successful social enterprise, or social venture, will greatly reduce pressure on limited government coffers. The government has made a commitment to improve access and reduce barriers for people with disabilities, but it has also made it clear that new money will not be provided. Rather, we need to think about how existing funds can be better utilized and how pressure can be reduced on future funding. Recommendations and/or Next Steps – what needs to happen to make this a reality? This concept will be raised at public consultation sessions throughout the White Paper process. Disability Foundation executive director, Duane Geddes, has committed to raising the concept with Minister Don McRae in the very near future. 35 Disability White Paper Open Space Topic Name: Individual Statement Convener: Bonnie Sherr Klein, OC Participants: n/a Discussion Session Reports If BC were the most progressive province for people living with disabilities… We would be living in together in accessible communities with people from all generations and all abilities, fully participating in all activities, with accessible transportation, education, health care, everyone contributing according to their abilities, and receiving the supports they need. An inter-dependent community. 36 Disability White Paper Open Space Discussion Session Reports Other Topics Identified The following is a list of topics that were identified by participants but for which there was inadequate time for discussion during the Open Space session: Idea Originated by: Accessible, inter-generational, mixed communities with available supports Bonnie Klein BC is inclusive for people with invisible and visible disabilities. We respect diversity and support diversity in a way which results in equitable (equal) outcomes for a lifetime (pre-school thru seniors) Jane Blaine Inclusive primary, elementary, secondary and postsecondary education Amy Nugent Increase community accessibility and bylaws More accessibility for people with vision loss in stores and restaurants – such as Braille price tags, menus, expiration dates, labels and such Vanessa Elder Assistance in finding work for people with disabilities in their communities Vanessa Elder Technology – available, affordable, adapted, education Linda McGowan Easier access to adaptive equipment (like EATI) Heather McCain Recognition of the cost of having a disability. Many programs have an eligibility ceiling that is too low Linda McGowan Income supports that would enable people to meet basic needs – i.e. PWD benefits double its current rate Connie Kostiuk Medical Support: Some essential medical equipment is necessary for people with disabilities. For example, Type 1 diabetes using insulin pumps at a cost of $7,000 - $10,000 each. How are we to cover these costs? Amy Amantea Assets – accumulation trusts not required to save money. Spend how you want; allow increase in 37 Heather McCain Sheila Abraham Disability White Paper Open Space Discussion Session Reports Idea Originated by: assets A barter system for individuals to exchange and share services to meet their needs (credit system to share & support each other Transportation: affordable, available, accessible, emphasizes quality of life (e.g. spontaneous) Better Handidart funding including rural Bonnie Klein Transportation is accessible. The para-transit system is a fair process; the eligibility process is nondiscriminating of those who need services the most. Cutbacks are not on the backs of people who need the services the most. Tasia Alexis Reframing disability/deaf – changing our views leading to changing society. We as humans first – how we want to be viewed and given/take access to society Leanor Vlug Attitude change: the shift of perspective of disability – “we are not inspiring and special” Karen Lai UN Convention Jill Weiss Housing Supports – no institutions; housing for people with disabilities that is accessible, affordable; where choice and autonomy is paramount when deciding where to live. This includes people with physical disabilities, people that are aging, and people with mental health issues Increase in quantity and quality of accessible housing (both subsidized and non) throughout the entire province (not just Vancouver) Heather McCain Visibility law in BC – all new housing visit-able (stair free entrance, wider doors, bathroom accessible) Jill Weiss Accessing information is key + knowledge – deaf, deaf blind and hard of hearing needs not met Leanor Vlug 38 Warren Walker Linda McGowan Tasia Alexis Disability White Paper Open Space Discussion Session Reports Idea Originated by: Accessible Government Websites: tax benefit for employers who hire people with disabilities based on % of their workforce. In dire need of trustworthy aboriginal advocates 39 Rob Sleath, ASIC Frank Martin Disability White Paper Open Space Discussion Session Reports Participants Name Organization Sheila Abraham Tasia Alexis Developmental Disabilities Association Amy Amantea Canadian Council of the Blind, BC Yukon-Division Barb Bawlf RCFC Nata Belcham Burnaby Association for Community Inclusion Lynda Jane Bennett Gary Birch Neil Squire Society and member of the Minister’s Council on Employment and Accessibility Jane Blaine BC Blind Sports and Recreation Association Faith Bodnar Inclusion BC Vikram Bubber Kent Cadogan Loftsgard Melanie C. Caple Paul Caune Civil Rights Now! Ross Chilton Community Living Society Isabelle Colas SPARC BC Karen De Long Inclusion BC Jane Dyson BC Coalition of People with Disabilities Vanessa Elder Mr. Elder Ted Emes Muscular Dystrophy Canada Debbie Finlay The Voice of the Cerebral Palsied of Greater Vancouver 40 Disability White Paper Open Space Name Discussion Session Reports Organization Darryl Flusdy Florence Flynn BC Association of Social Workers Ken Fraser Vancouver Resource Society Stan Fraser Grief To Action Paul Gauthier BC Personal Supports Network, BC Association for Individualized Supports for People with Disabilities Duane Geddes Sam Sullivan Disability Foundation Victor Glass Progressive Intercultural Community Services Christine Gordon BC Coalition of People with Disabilities Murray Hamilton Vancouver Resource Society Cindy Hayto Burnaby Home Health Asia Hollingsworth PosAbilities Lorraine Holmes Stroke Recovery Association of BC Sally Hull British Columbia Schizophrenia Society (BCSS) Claire Ireland Burnaby's Access Advisory committee Ken Ireland Burnaby's Access Advisory committee Debbie Irwin MS Society of Canada, BC and Yukon Division Suzan Jennings AOA Access Oceanside Association John Jennings AOA Access Oceanside Association Celina Jeves Chilliwack Mental Health Centre Louise Johnson Sarah Khan BC Public Interest Advocacy Centre Connie Kostiuk Vancouver Coastal Health Jenny Kwan MLA for Vancouver – Mt. Pleasant 41 Disability White Paper Open Space Discussion Session Reports Name Organization Karen Lai BC Centre for Ability Association and member of the Minister’s Council on Employment and Accessibility Jerry Laidlaw CLBC Deepi Leihl Spectrum Society Fiona Lewis BC Association of Social Workers Jean Lewis Medicare For Autism Now (& Civil Rights Now!) Barbara Lindsay Alzheimer Society of B.C. Robin Loxton BC Coalition of People with Disabilities Laura Mackenrot City of Vancouver Persons with Disabilities Advisory Committee David Marley Medicare For Autism Now (& Civil Rights Now!) Chris McBride Spinal Cord Injury BC Heather McCain Citizens for Accessible Neighbourhoods (C.A.N.) Linda McGowan MS Society of Canada Sharon Milewski Women Against Violence Against Women Kendra Milne Community Legal Assistance Society Rebecca Morris Alzheimer Society of B.C. Valerie Nicholson Positive Living Society of BC (Board) Amy Nugent Inclusion BC John Olldym International Society of the Handicapped of Greater Vancouver Jeanette Poulsen Civil Rights Now! Erin Pritchard BC Public Interest Advocacy Centre Carla Qualtrough Chair of the Minister’s Council on Employment and Accessibility 42 Disability White Paper Open Space Name Discussion Session Reports Organization Bonnie Sherr Klein Rob Sleath CNIB BC-Yukon Division Board Neil Stark Abbotsford Community Services Henry Stuive CNIB Yoshinori Tanabe International Society of the Handicapped of Greater Vancouver Jay Townsend CLBC Amy Tutkaluke Spectrum Society Carolyn Vacheresse Pediatric Cancers Survivorship Society of BC Wilfred Vacheresse Vach Group Leanor Vlug Greater Vancouver Association of the Deaf Warren Walker Allison Ward Community Legal Assistance Society Jill Weiss City of Vancouver Persons with Disabilities Advisory Committee Fiona Whittington-Walsh Civil Rights Now! Karen Williams SPARC BC Laurette Yelle The Voice of the Cerebral Palsied of Greater Vancouver David Young SOURCES 43