Wednesday, 15 June 2016

The Oulton Family Fights for Daughter

The Oulton Family Story

We, along with the support group Advocating Parents of Nova Scotia, and other concerned citizens are asking you to help our very sick 12 year old daughter, Morgan, who was born with multiple brain abnormalities (arachnoid cysts, polymicroyria, and grey matter heteratopia), suffers from severe intractable epilepsy and autism, sensory processing and behavioral disorder, and is considered high risk for injury or death.

She has run out of treatment options and her neurologist, Dr. Ellen Wood, has prescribed medicinal cannabis oil, but the Dept of Community Services will not allow her to be treated with cannabis while in their care. ```````````````````````````````````````````````````````````````````````````````````````````````````````````

Her entire life Morgan, under doctor care and advice, has been prescribed more than15 behavioral and anti-seizure styled drugs - all had very serious side effects and are not working.

·         Anti-seizure drugs cause behavioral problems, while behavioral meds caused increased seizure activity.

·         Daily Morgan experiences up to 10 seizures, hours of exhaustive sleeping or screaming

·         Morgan has lost cognitive growth, function, and the ability to carry on a conversation (mostly limited to repetitive/mimicking speech).

·         Morgan has lost tooth enamel, bone marrow, hair, bladder function, because of side effects from the FDA approved prescription medications.

After 5 years of requesting, Dr. Wood agreed and referred her to The Cannabanoid Medical Clinic in Halifax where she was seen by Dr. Mark Fletcher specializing in cannabis use.

Dr. Fletcher did not hesitate giving Morgan a prescription for 1:20 CBD Oil after looking at her medical history. The Department of Community Services ruled against it and will NOT allow it to be given while in care, forcing us to make the decision between our daughter’s health, welfare and safety.

We the undersigned, Citizens of Canada, call upon the Government of Canada and the Minister of Health to  convince the Dept of Community Services to allow all doctor approved therapy including cannabis.

Wednesday, 16 March 2016

Preview In Their Own Words - the fifth estate

Watch "In their Own Words" on CBC's the Fifth Estate, March 18 - 9pm

Use your voice to let your MLA know that you value the lives of people with intellectual disabilities and their caregivers. Find your MLA on Facebook, give them a call or write them an email with the following message (copy and paste)

I am against warehousing people in institutions.  I value and respect people with disabilities and I am for inclusive community living.  The McNeil Liberal government promised at the beginning of their mandate to follow through with the plan outlined in CHOICE, EQUALITY  and GOOD LIVES  in INCLUSIVE COMMUNITIES (also known as The Roadmap for Change). As my representative I would like you to ensure this plan is implemented.

Nova Scotia still has 6 institutions and is still referring people to these institutions to live. This is an archaic model that isn't healthy for society, people with disabilities their families or caregivers.  Use your voice to make a difference.

Sunday, 13 March 2016

We Want to Create a "FRENZY"!!!

The Fifth Estate trailer is coming soon and we need YOU to share and retweet....


Over the years Advocating Parents of Nova Scotia has been on the news, the radio, national radio and in snippets on the national news.  You have been touched and engaged by the stories we shed light on.  We know this by all of the liking, sharing, commenting and retweeting you do on our social media!

On March 18, 2016 the Fifth Estate will be presenting an investigative report on the lack of services and the breakdown in the social system for Nova Scotians with disabilities.


We would like everyone in Nova Scotia (and Canada !!) to watch the Fifth Estate.  Successive governments have been using your tax dollars to keep institutions alive and well in this province. This is NOT a best practice across Canada or across the world. The hope is that there will be renewed political will to create inclusive community living for all people with disabilities in Nova Scotia.

How can YOU help? Easy as 1-2-3

1. Go to Advocating Parents Facebook & Twitter
 Share our post with your:
Facebook friends & Twitter followers
neighbours & friends
that Nova Scotia will be featured on the Canadian national program The Fifth Estate.
Go to Advocating Parents of Nova Scotia's

2. Watch The Fifth Estate on CBC at 9:00pm.

3. Contact your MLA and let them know you don't approve of warehousing people in institutions.

Find your MLA

Disclaimer: Sharing may cause all of Canada to watch.  The Nova Scotia government may change the way they handle cases of people with disabilities for the better. Who knows?

Saturday, 5 March 2016

Incredible Journey - Real Life

Brenda Hardiman, Chairperson, APNS
A Note From the Chair..... 

Awake early this morning anticipating my Fifth Estate Interview today. Feeling anxious and experiencing some anxiety. I'm thinking positive because often when I do ....the results ARE positive.
Thank you to all of my friends on and off facebook who supported me and my family during the last couple of years. Nichele would not be in such a kind loving home of her own, working as a housekeeper, and being an advocate and spokesperson to students at Junior High Schools in Nova Scotia. She speaks to students about not using the "R" word (retarded) and it's effect on people when it's used. She also speaks to her personal experiences of being forced to move into a large psychiatric institution and living in pure hell. Junior high schools learn about civil rights and she tells them how her civil rights were taken away and what that felt like. We all, by law, have choice on where and with whom we live.
The abuse she experienced while living in an institution was the hardest thing of all. The very people hired to care and protect are the very people who would almost destroy her.
Nichele is NOW in HER OWN home surrounded by caregivers that actually care.
So today I share our story with Canadians, hoping that in doing so, will promote change in Nova Scotia, close the 6 horrific Institutions and follow the roadmap for change. It is our hope that no other human being will be exposed to experience what our family was forced to experience .
Rather than waking up in a warm bed in her own home, Nichele could very well have been waking up, cold, in a different institution called jail, following in the footsteps of poor Ashley Smith.
I'm grateful for all of you.

Sunday, 31 January 2016

Meeting of the Minds

Meeting of the Minds

 APNS FaceBook

This week Brenda Hardiman, chair of APNS, had a chance to collaborate with a national group called Every Canadian Counts.  She met with Dr. William Cowie to talk about some of the ideas that ECC has around how to best serve persons with disabilities. See more on their philosophy with this great video :

Advocating Parents of Nova Scotia believes that the thinking of people & government is ever so slightly starting to shift to see people with disabilities a vital part of our community that deserve choice and inclusion as a human right.  It's refreshing to network with other groups that have similar values. ECC Twitter


Monday, 18 January 2016

What does APNS really want anyway?


 It's simple.  Inclusive living for all Nova Scotians.  Implementing that little request is a lot more complex of course but it's time to get started.
The NDP's were in power under Premier Dexter before the Liberal government was voted in.  One thing the NDP did was get together a group of stake holders to develop a plan to bring Nova Scotia into the 21st century when it comes to persons with disabilities  living in care of the province.  A round of applause for the NDP's because they developed a very important and doable plan.  It's a good plan & accepted by many advocacy groups in NS as the way to move forward. Bring yourself up to speed - read the link below.

The above document has been nick named " The Roadmap for Change".  It's easy to read and understand but it's lengthy. People First of Nova Scotia has a plain language version that I've linked from the  People First of Nova Scotia website.

The Minister of Community Services, Hon. Joanne Bernard , when elected promised not lose momentum with the Roadmap for Change as it is so important.  That has turned out to not be the case.  Posted below is the ~

                                                   Report Card on the Progress of the
Nova Scotia Government’s Transformation of Services for Persons with 
Developmental Disabilities

We believe that everyone should have options and choices in their lives.  No one should have to live in an institution against their will.  Being a part of a community should be a basic human right in Nova Scotia.

Image result for community

Advocating Parents of Nova Scotia is committed to holding the NS government to their word.  Find us on Facebook ( Like & Share!) or on twitter @apofns (RT us!)

Community Homes Action Group

Report Card on the Progress of the
Nova Scotia Government’s Transformation of Services for Persons with
Developmental Disabilities


Community Homes Action Group members involved with this project:

 Jean Coleman – Nova Scotia Association for Community Living (NSACL)

Ken Deal, PhD - Associate Professor, DeGroote School of Business, McMaster University*

Dr. Brian Hennen - Dalhousie University Family Medicine *

Paula Hutchinson, PhD *

Wendy Lill - Member of Parliament (1997 – 2004), Board Member of NSACL*
Lois Miller - BA, BEd, MA, Member of Boards of Independent Living Nova Scotia Association & the James McGregor Stewart Society
Stella Samuels – MA - Nova Scotia Association for Community Living
Nancy Walker – BScPT, MSc *

Members with an (*) after their association are family members of persons with disabilities.

Executive Summary
In 2013, the Nova Scotia Joint Community-Government Advisory Committee on Transforming the Service to Persons with Disabilities Program was formed with membership from community advocacy groups, service providers, persons with disabilities and government due to a widespread consensus that the system of housing for persons with disabilities was in crisis. Over 1500 people were living in large care facilities. There were no community-based services for persons with complex health and behavioural support needs. A moratorium had been placed on the creation of new small option homes in the 1990’s and the waitlists for all residential services had grown to well over 1000 people. There was no flexibility in funding or services to allow for people to engage in self-directed care and to exercise choice and control. The human and financial costs of people being housed inappropriately were skyrocketing.
The Joint Advisory Committee tabled their report Choice, Equality and Good Lives in Inclusive Communities - A Roadmap for Transforming the Nova Scotia Services to Persons with Disabilities Program (hereafter Roadmap) and it was accepted as the way forward by the provincial government. The program is now called Disability Support Program. Since then, additional transformation documents have been produced internally by the Nova Scotia Department of Community Services (DCS) and the Roadmap message has been changing. Some might say that it has wandered off the road and has produced no significant action.
However, the most recent message is clear. The current system is not sustainable so where are we on this new road? Nova Scotia is two years into the Transformation, but what does it really look like for people with developmental disabilities, their loved ones and service providers? What progress has been made to date?
Community Homes Action Group (CHAG) was formed in 2010 to stimulate public and government awareness and promote action on the critical situations facing persons with disabilities and their families. We have carried out a province-wide survey to gauge the progress of reforming services two years into the Roadmap. The questions in the survey were based on the Roadmap’s main recommendations:
·       Providing person-directed planning and decision-making
·       Providing community-based housing options
·       Reducing reliance on institutions
·       Increasing employment opportunities and
·       Decreasing wait lists.
Through CHAG’s network, people were invited from across the province to respond to an online survey or fill out a paper version. Support to fill out the survey was offered to anyone who needed it. One hundred and sixty-eight (n=168) people responded. At least one person from every county in Nova Scotia voiced opinions. Family members and people with disabilities answered as well as professionals from health, education and community. In addition to rating the government’s progress on a scale from 1 (poor) to 10 (excellent), our respondents provided close to 1000 verbatim comments. This was meant to be a snapshot but we heard people’s voices - loud and clear.
This report card reflects that Nova Scotia constituents have not seen any significant achievements by DCS in addressing Roadmap recommendations. People with developmental disabilities are still waiting for appropriate housing and supports.  Their family members’ and service providers’ expectations of the Transformation process have not been met.

CHAG, on behalf of those responding to this survey, asks the provincial government to honour the Rights of persons with disabilities as outlined in the United Nations Convention on the Rights of Persons with Disabilities and produce discernible helpful actions on their behalf.  We ask the provincial government to:

·       Commit to person-directed planning and support, create community based living options, close institutions, increase employment and reduce waitlists.
·       Work with families and service providers across the province to create small community based housing options.
·       Commit to stopping new placements to ARCs or RRCs as of June, 2016 as outlined in Community Services’ 10-year Plan for Transformation.
·       Begin work to reform all disability related legislation in accordance with the UN Convention on the Rights of Persons with Disabilities.
·       Report regularly to the community on the number of people with developmental disabilities on waitlists for housing options and provide updates on the progress in creating new housing opportunities.
·       Provide substantive investment to fulfill the promises made to Nova Scotians with disabilities and those involved in their lives. 
The Community Homes Action Group has given the Nova Scotia Community Services’ Disability Support Program a failing grade for its initial two years performance in implementing its ten year transformation strategy.
CHAG has heard from many families across the province that they remain in crisis. The DCS Transformation so far has been a failed process, not reaching people in need, producing no supportive actions, nonresponsive and remaining crisis-driven. The original Roadmap document has been distorted and diluted and no longer reflects the initial intent.
With this survey’s results, we can state with certainty that people having disabilities remain neglected. We believe that austerity is no excuse for leaving people in crisis. Where has DCS spending gone if it has not alleviated the needs of disabled members of the Nova Scotia community?

Survey Methods
The survey sampling was conducted during September and October of 2015. The final count of completed questionnaires was 168. At least one person from each county in Nova Scotia responded to the survey request.
Text Box: 168 people responded to the survey: 7 people with a disability, 94 family members, 41 service providers, 23 social/health professionals, 10 teachers, and 21 identified as other (for example (i.e.), friend, volunteer, or researcher). 24 people had more than one role (i.e., a parent may also be a teacher or social/health professional).Who contributed their opinions?

Text Box: 137 people told us where they lived in Nova Scotia. At least one person from every county in Nova Scotia filled out the survey with the majority of the responses coming from Halifax County (n=74).

The Survey Results
1. Providing Person-Directed Planning
The first question was: “In your opinion, how effective has the Government of Nova Scotia been in providing person-directed planning for people with developmental disabilities during the past two years?”
The government’s effectiveness was rated by 166 respondents on a scale of 1-10 (1=poor to 10=excellent). Two people said it did not apply to them. DCS was rated below the scale midpoint by 88%, 35% said “poor” and the average response was 2.8 out of 10 indicating very low effectiveness. If 10 were equated with A+, 9 to A and so on, the greatest number of respondents gave DCS a grade of “F”.
There were 112 verbatim comments. Most of the comments were provided by those who chose low numbers on the scale. Two positive comments received scores of nine and described the exemplary efforts of an early interventionist and a care coordinator. Overall the comments describe a lack of person-directed services.
What people told us:

There is a lack of person-directed planning in the DCS system. Options for housing for persons with developmental disabilities are bleak.
“The system still is very paternalistic in its approach. There can be no real ‘person-directed’ planning if there are no endpoints to plan for and if there isn't an actual range of options.”

“While there is some certainty about DCS personnel understanding the concept at the intellectual level, there is no evidence to suggest willingness, desire or conceptual awareness of how to implement person directed planning. There are isolated local examples of care coordinators and supervisors exploring person centered planning methods like PATH, and attempts on their part to support PATH initiatives with consumers. The Department's capacity to relinquish control over all aspects of a person's life is the largest obstacle to implementing this particular aspect of the transformation plan.”

“My daughter has been in an Alternate Family Program with the goal of moving into a group/options home. In the past 8 years there has been no movement. Recently, the family in which my daughter resides will not be able to provide service due to changes in their family dynamic. With a 30 day notice, I was informed that I have two options. 1. My daughter return to the family home or 2. My daughter move into Adult Protection. In reality, I was given no option and no assurance that a place would ever be available. My daughter has gained a measure of independence which would be lost upon a return to the family home. (this is not person directed planning......this is crisis management which has an adverse effect on my daughter and the family.)”

Without person-directed planning, people with disabilities have to rely on advocacy or crises intervention for support. Not everyone has a support system to help them. Many people are neglected.
“I am of the opinion that if it weren't for the parents who are struggling on their own to find services, provide services, communicate with the individual’s worker, they would not be able to live independently. Perhaps the line between someone who is marginally living in the community and being a homeless street person is one family member, who has taken on the sometimes exhausting role of overall support person, including: advocate/companion/social facilitator/health care advocate/transporter to appointments/mental health crisis intervener/financial advisor/etc.”

“Very little has happened in this regard - any initiatives have been with Service Providers. In some situations, when a personal development plan has been developed by a person with a disability, DCS will challenge it.”

“From my experience it seems that those individuals who are verbal and can articulate for themselves are more likely to be listened to but those who have more significant needs are at the mercy of others.”

If person-directed planning is to become a reality, funding must be individualized and follow the person.

“We don't see where people have choices that are not Gov't forced or mandated. If people had choices they would not live in institutions.”

“Government must stop funding buildings where ‘people are put’ and start investing in people to live where they want, with whom they want--designing supports around individual needs & desires with individualized funding.”

“I have seen some improvements in the supports that my adult son receives. There does seem to be a little more flexibility and his supports are transportable and attached to him not some bed in a group home.”

Question 1 - Summing Up:
The people who responded to this survey have strongly endorsed person-directed planning to facilitate decisions related to creating appropriate housing options. There is an overwhelming opinion that person-directed planning is not in practice; nor is there is any indication that person-directed planning has been incorporated into provincial policy. There is a sense of urgency as one parent states: “My son has the right to live within his community and have a life. The Nova Scotia government cannot wait any longer as people like my son are in crises and families are at risk.”
2. Increasing Community-based Housing Options
The second question was: “How effective has the Government of Nova Scotia been in providing more community-based housing options for people with developmental disabilities during the past two years?”
The government’s effectiveness was rated by 153 people on a scale of 1-10 (1=poor to 10=excellent). Fifteen people said it did not apply to them. DCS was rated below the scale midpoint by 94%, was rated as “poor” by 51% and the average response was 2.3 out of 10 indicating very low effectiveness and progress.
There were 99 comments. Most of the comments were provided by those who chose low numbers on the scale. One positive comment was applauding community-based options.
What people told us:

Individuals and families are advocating for more and improved residential options. Services are given to those who can advocate and are willing to reveal their family’s private lives to the media.
“Families are not getting answers to their requests to have their children move into the community.  It isn’t about bricks and mortar, it’s about the will of government to think outside of the box.”

“Only those families who have been in the media with high-profile cases advocating for their children to leave institutions have had the luxury of new homes and seeing their children move into the community. This is how government chooses to spend its money and lacks the political will to make it happen.”

“There has been some movement with funding made available for the independent living support program for individuals who can live independently with visiting support up to 21 hours per week.  Otherwise new housing options have primarily been developed to address critical issues where the media/politics have been engaged.”

It’s confusing. Who receives an appropriate residential option? Individuals are being turned away if they are too young, or if their needs are too high, or if they are not high enough.

“There are only a few spots for children in this province at the moment.  Also, families do not have a full treatment centre that they could take their children when in crisis (instead of calling the police or taking them to emergency).  Before even considering housing, people with disabilities need to be given the option of staying at home (if that is what they and their parents desire).  If they want to move, more resources need to be allocated to increase their level of independence and their ability to gain and sustain a meaningful work placement.”

“I have a son, 28 yrs old, still living at home.  He has been on a waiting list for seven years but they tell us there are too many others worse off on the list so it will be many more years.  My son is depressed and would love to be out on his own or in a group home.”

Families in Nova Scotia are in crisis and afraid of the future.

“There are not enough supports for families to create flexible solutions that meet their adult dependents’ needs.  The system needs to be changed more efficiently and with a shorter timeline…there are too many people in crisis.”

“Our child is too young to be affected by this yet, so we are not sure.  But terrified for his future.”

Service providers and families are developing solutions, and some are cost-neutral, but they are not being accepted or implemented by the government.

“I work in a large facility which supports over 100 individuals. There have been no efforts to promote or support new placements in the community by DCS.  Our organization has submitted new proposals for community homes which have not been supported or approved.
As a service provider, we submitted a cost-neutral proposal to the DCS to open a new 4-bed community home with blended levels of support.  All of the individuals wanted to live together despite their different need…in fact they would be each other’s “natural support” in their own communities where they grew up and work.  This proposal was rejected.”

“For one service provider, a 10 bed group home for adults who have experienced mental health issues was replaced with a four bed small option home.  The six residents who left the home were placed within existing small option homes or their own supported apartments.  The net impact of the change within the region was a loss of 6 residential beds and a gain of six independent Living (ILS) apartments.”

“Our family has been trying to access grants for a wheelchair-accessible home for the past two years and have been thwarted in all our efforts. (People with developmental disabilities are sometimes physically disabled too.) The staff we have dealt with at Housing Nova Scotia have not returned our calls or emails and there is a disconnect between the Housing Nova Scotia website and the information we sporadically receive from the staff.  The information given on the website could not be farther from reality.”

Question 2 - Summing Up:
The Nova Scotia Department of Community Services is seen here as a nonresponsive system, resistant to staff and/or family suggestions, and reactive mainly to crisis situations. Families are fearful of the future and their adult children being left without support as the families age and become less able to provide care.

3. Reducing reliance on Institutions as Housing Options
The third question was: “How effective has the Government of Nova Scotia been in reducing reliance on institutions as a housing option for people with developmental disabilities during the past two years?”  
The government’s effectiveness was rated by 144 people on a scale of 1-10 (1=poor to 10=excellent). Twenty-two people said it did not apply to them. DCS was rated below the scale midpoint by 93%, was rated as “poor” by 44% and the average response was 2.6 out of 10 indicating a very low effectiveness. Once again, the greatest number of people rated DCS as “Poor” with a mark of “F”.
There were 89 verbatim comments. Most of the comments were provided by those who chose low numbers on the scale. One positive comment received a score of 10: “There are more small options homes opening up which gives clients the sense of home.” Overall the comments indicate that institutions are still thriving in Nova Scotia.

Institutions are major employers in this province. The government’s investment in these institutions may be a barrier to community-based living.

“…it is fine to write reports but it is not matched with DCS walking the road and taking real action towards achieving the end of this model in Nova Scotia. As long as these institutions are seen as being the main provider of good, well-paying jobs in certain areas it will be very difficult to eliminate them without clear will of government.”

When service providers try to move people into the community they hit roadblocks too.

“As a larger facility, we have been trying to move more and more people out – we have had some success but there are still a number of individuals that could be supported in the community. Even for our current community homes. In some situations, in consultation with the resident, we have determined they should move to a community home. Invariably we end up in a dispute with the Care Coordinator who knows very little about the person, who will not agree with a move to a community home.”

“We still incarcerate hundreds of people. This is unacceptable.”

There has been no progress made on the Roadmap. Instead government has been putting its energy into defending why there has been no change.

“There is no published plan of action to implement a closure of these facilities as proposed in the approved roadmap for transformation. The published timelines have been delayed two or three times, it is not entirely evident that a moratorium on new admissions to these facilities has been implemented.”

“They don’t seem to have done anything but defend institutions.”

“There is no real reduction in the reliance on institutions. There is a lot of rhetoric, but no real progress.”

The health impact on individuals and their families is significant.

“One has only one choice by the time one comes to the end of their rope, so to speak. Put your young adult in an institution or suck it up, grinding both yourself and your child into the life of despair.”

“Institutions are like guillotines hanging over our heads. If we fail or falter and let go of the rope it falls and severs our family in half. I’ve lived with the fear that my son would end up in an institution for over twenty years. As long as institutions exist families will live with this threat.”

 “The very few who manage to get out of institutions do so by embarrassing the government in media or taking them to court.”

“That was the option and my daughter lived in the Rehab for 6 weeks then in the nursing home for 6 months then part time help for her while she lived with me and some care was available for part time until I had surgery and could no longer lift her; she only weighs 73 lbs. but I can't lift her because of a large hernia.”

“There are still adults with ASD living in institutions who probably got there because of lack of knowledgeable support workers and team ....including the health workers. If you are in the autism community … you understand this thoroughly.....we need autism specific supports and understanding.” 

Question 3 - Summing Up:
The respondents are people from all walks of life; parents, staff in institutions, families with a son or daughter with a disability. They have given the government a failing grade. They have not seen any progress to build capacity in the community to enable people to move out of the institutions. The case workers are not taking the recommendations of hands-on staff who have clearly suggested people would be better suited living in the community.  There were very few positive comments; the feeling is that there is a lack of will by government to help those who have the greatest needs for assistance. Institutional referrals are being made on a regular basis and there is no adequate housing capacity being developed by DCS in Nova Scotia’s communities. In conclusion, DCS still relies heavily on housing disabled people in institutions, DCS still places those with disabilities into institutions and Nova Scotians have seen no indication that those inappropriate actions will stop.

4. Increasing Employment Options
The fourth question was: “How effective has the Government of Nova Scotia been in increasing employment opportunities for people with developmental disabilities during the past two years?”
The government’s effectiveness was rated by 140 people on a scale of 1-10 (1=poor to 10=excellent). Twenty-eight people said it did not apply to them. DCS was rated below the scale midpoint by 90%, as “poor” by 44% and the average response was 2.6 out of 10 indicating very low effectiveness. The greatest number of people gave DCS the lowest rating once again.
There were 97 comments. Most of the comments were provided by those who chose low numbers on the scale.
What people told us:

People with disabilities face employment discrimination.
“I am deeply disappointed that the government seems to have decided to abandon the roadmap. It is very concerning that they now speak of only providing help in finding jobs in the community for people who are ‘employable’. Who decides who is employable? The starting point should be that every individual is employable and has something to contribute.”

“I pray each day that my son will find a job he enjoys and becomes a contributing citizen.”

“People with disabilities remain some of the poorest of the poor.”

With no employment or occupational options “...Parents live in fear of their children leaving school…”

“Currently, we have connection with at least 7 acquaintances (families), who have young adults who have ‘graduated’ from high school within the past 3 years (includes our own son), who have NOTHING to do throughout each day, unless extra money and time is spent by the family to involve and ‘entertain’ that individual in community activities after daytime work hours. It is even difficult to find ‘volunteer’ activities in which to engage them.”

Parents and residential service providers are the ones developing new employment or day program options in Nova Scotia.

“Parents are networking and finding employment. Parents have to create jobs. Beg for services.”

“The provincial government is relying on the service providers to develop their own supported employment opportunities. They are offering no support in this area.”

“There have been no directed efforts on a provincial level to advance employment for persons with developmental disabilities…”

Most people with disabilities are unemployed, underemployed, or insecurely employed.

“I believe that there are instances where individuals with developmental and intellectual disabilities are given some employment opportunities. However, these ‘opportunities’ seem to be extremely low caliber jobs that, in my opinion, are borderline exploitation. The government puts the onus on non-profit organizations to hire these people when they do get jobs, but yet, the government is not stepping up to try and help people fulfill the jobs they are capable of.”

“My child did try one program, was paid $1.00 per hour for her part-time training/work, that lasted for 9 or 10 months, but it didn't lead to any work opportunities…”

“[My] son has been ‘working’ at same job since 2010. No funding in place to provide employer incentive to hire, therefore he has been working unpaid for 5 years.”

Nova Scotia does have successful employment programs that we can build on.

“Last year, there were two more ACHIEVE programs rated at two sites in NS. This is excellent-we need that to continue. As well, there are programs starting at universities for developmentally disabled youth. These are good but numbers are limited.”

“The government has continued to support several community-based employment services including the ACEE program of Independent Living Nova Scotia in the Halifax-Dartmouth area, and outreach services at members of the Directions Council. There are successful programs like these to build on.”

“There are some very positive stories coming out of The Flower Cart, but alternatives for self-employment like CAPRE are seriously under supported.”

The government needs to “walk the talk” of inclusive employment policy and practices.

“Accessibility legislation is a good start.”

“Though there have been policies created around diversity, one just has to look at the makeup of government employees to see that there is a lack of any meaningful attempt to include people with disabilities in their own ranks. This means that other sectors certainly can't look to the gov't of NS to be a model of diversity and inclusive employment. Though there are some national initiatives (RWA) the province is falling behind.”

Question 4 - Summing Up:
People are concerned that there is a significant lack of employment opportunities for people with disabilities in this province, even after they complete employment readiness programs. Money is being put into sheltered workshops instead of educating employers on inclusive hiring practices. Parents are doing the lion’s share of the work to find volunteer and employment opportunities for their adult children. There is a lack of faith in a government that does not reflect diversity in its own workforce. Ultimately, families are fearful for their children’s futures.
5. Decreasing Waitlists
The fifth question was: “How effective has the Government of Nova Scotia been in decreasing waitlists and the gridlock within the system for people with developmental disabilities during the past two years?”
The government’s effectiveness was rated by 153 people on a scale of 1-10 (1=poor to 10=excellent). Fifteen people said it did not apply to them. DCS was rated below the scale midpoint by 95% of respondents, rated “poor” by 47% and the average response was 2.3 out of 10 indicating a very low effectiveness.
There were 89 comments. Most of the comments were provided by those who chose low numbers on the scale.
What people told us:

Individuals and families feel stuck and have no hope that the waitlists will improve.

“There has been no movement. Every person with a disability goes into a priority based on their needs determined by the care coordinator and the placement coordinator. In the priority there are levels based on care required and then there is their position on the wait list. My son is priority 3, level 3, position 3, a black hole of despair for us as parents.”

“Waitlists (particularly in rural areas) continue to be unacceptably long for younger Nova Scotians.”

“To my knowledge nothing has been done to decrease waitlists.   My own son has been on the list for over 20 years.  How can this be?”

The government is not opening new homes and there has been no commitment to reducing waitlists.

“There were high hopes there would be some movement for people on waitlists but nothing has changed. In two years, DCS seems proud to have placed 62 people in community based options. Waitlists have not decreased. Nova Scotia's waitlists are so long because they stopped creating community based options for over a decade and we are now suffering families and individuals wanting to start independent lives are enduring the consequences of bad public policy.”

“Placements are being made but no new infrastructure to build capacity.”

Aging parents feel that time is running out for them and they worry what will happen to their adult children when they die.

“The fact that our son has to wait for at least seven years to get into a program at DASC Industries cause me concern.   Especially now that we are in our seventies.”

“My son is almost 40 years old and during his life I have had to advocate, even fight, for him to have a quality of life that is a given for the average person.  Where there have been no services for him we have created them.  Who will continue to create those services or even maintain them, when we are gone.”

People who are on the waitlist for community-based homes assume that someone else with higher needs is receiving service.

“Poor poor and double poor.  Plus the system is crisis driven, so when are the people who are not in a crisis situation ever to hope for a place to live.”

“Supposedly the waitlists are shorter for sheltered workshops, but they are still at least two to three years long.  We have been on a list for housing for over ten years and never been contacted, so I assume it is only by extreme emergency that housing is made available.”

Individuals who are experiencing crisis are falling through the cracks of a broken system.

“Adults with autism have NO wait lists because we have no services including.....psychiatrists trained in the adult system to help with the over 10,000 people in NS who have autism, of which at least forty percent will develop a Mood Disorder. MY SON ATTEMPTED TO KILL HIMSELF LAST NIGHT AND I AM SO FRUSTRATED AND ANGRY AND SAD.   I FEEL LIKE WE are DISPOSABLE.”

“Son died while waiting for appropriate care.”

Question 5 - Summing up:
People have expressed tremendous disappointment at the lack of progress in tackling waitlists for housing or employment services.  Individuals are being left in hardship and limbo for five, ten or even more years.   There is a feeling of helplessness and frustration from families who want to find some security for their loved ones before they pass away.  Tragically, one parent remarked “my son died while waiting for appropriate care”, while other elderly parents are genuinely frightened when thinking of their child’s care when they pass on.
A final quotation:
 “It is sad indeed, when NS was actually a leader in the area of closing children's institutions in our province to where we are today even after DCS spending has increased so dramatically.  We are fighting the same battle as parents 20 & 30 years ago.  We know the harm, neglect and abuse that individuals have endured living in institutions--this is no longer an argument. It is not difficult to support an individual to live a good life in their community.  The fact that we have not moved forward with the Roadmap, in this day & age, with the UN Convention and the Charter of Rights and Freedom, is simply beyond comprehension.”
Reaching out:
Community Homes Action Group remains committed to working with government, community-based organizations, and health and service providers; indeed, with anyone interested in changing the course. We believe there is a good home for everyone. We are concerned that many people are not living in safe appropriate places that support their humanity and provide opportunities for rewarding lives.

Additional References

Barken, R. (2013). A Place to Call Home: Intellectual Disabilities and Residential Services in Nova Scotia. Canadian Journal of Disability Studies, 2, 51-70.

Community Homes Action Group, A PLACE CALLED HOME, Tuesday, May 17, 2011, Standing Committee on Community Services and Hansard record of same date. ( or available through Gov't of NS.)

Community Homes Action Group and Nova Scotia Association for Community Living Joint Presentation, February 11, 2014, to Standing Committee on Community Services, and Hansard record of same date. ( or available through Gov't of NS.)

Choice, Equality and Good Lives in Inclusive Communities: A Roadmap for Transforming the Nova Scotia Services to Persons with Disabilities Program, June 2013

Hennen, B. (2006). Gaps and Silos: Persons with Developmental Disabilities Move to the Community. (Report of study leave granted by the University of Manitoba, July 2004-June 2005). Retrieved from

Kendrick, M.J. (2001). An Independent Evaluation of the Nova Scotia Community Based Options Community Residential Service System. Report to the Department of Community Services.

Nova Scotia Department of Community Services (June 2008). Report of Residential Services.