Darrell also leads a support group for PALS and is actively involved with the ALS Society in an advisory capacity and active fundraising leader.
www.easternlight.ca
A variety of agencies and services are available in many communities. Some are privately owned and operated for profit (proprietary), others are affiliated with hospitals, and some are private non-profit agencies. Be sure to speak with your Continuing Care Coordinator regarding placements on waitlist. There is currently 8 months to a year wait list for placement.
Awesome Advisory: Should a nursing home or other type of assisted living arrangement become necessary, please know that this is not the end of the road for you. Consider instead that it is a place to continue to live as long as you can as well as you can. Many of our PALS living in nursing homes continue their outside social activities, use their computer to stay in touch with family and friends, and still stay in control of their medical decisions. Staff from ALS NS are happy to make an appointment to visit your chosen residence to help them understand the special needs of someone living with ALS. Any equipment on loan from the ALS Society is available to you in a nursing home as well.
Palliative Care/Hospice Palliative Care
Awesome Advisory: Words are so powerful. Often, our PALS and their families do not wish to access the services of Palliative Car because of the connection of the word with imminent end of life. Please know that this is not always the case. Palliative care services are broad in scope and will support your family in their goal of helping you live your best life as long as you can.
Palliative care is an approach to care for people who are living with a life-threatening illness, no matter how old they are. The focus of care is on achieving comfort and ensuring respect for the person nearing death and maximizing quality of life for the patient, family and loved ones.
Palliative care addresses different aspects of end-of-life care by:
managing pain and other symptoms
providing social, psychological, cultural, emotional, spiritual and practical support
supporting caregivers
providing support for bereavement
Nova Scotia Continuing Care Information Sheet
To access Home Care through the Department of Health and Wellness Continuing Care: call 1-800-225-7225
Employees that work in this department are Care Coordinators. From the initial phone call you will be assigned a Care Coordinator based on the level of care determined at that time.
The program is divided into different service lines: Acute Care, Chronic Care, Self Managed Care and Palliative Care
Care Coordinators work in pods and are independent of the each other’s service lines. They will not be able to answer questions relating to the other programs but will discuss your assessment with their supervisor to ensure you are in the correct service line
The Care Coordinator will come to your home to assess your need for ongoing care. The initial assessment/home visit by the Care Coordinator could last over 2 hours.
Many questions will be asked to ascertain what care is required and a care plan will be established
During the assessment you are required to provide the Care Coordinator with your last income tax return and Notice of Assessment. From these documents the Care Coordinator will determine the amount you will pay per month based on your net income.
Continuing Care Service Lines
Acute Care - This care is Doctor directed immediately after hospital services with the expectation of complete recovery. This kind of care can be given by the VON. An example of this is the VON will visit once a peg tube is in place to ensure it is healing.
Chronic Care - This care is given on an indefinite basis to allow the client to remain in their home. This service line will give you a maximum 100 nursing or 150 non nursing hours per month. Your immediate care giver will be assessed for up to 40 hours a month respite care in addition to this for their personal use.
The financial assessment looks at the Family size and net income. An example would be a family with two adults and 2 children with a net income of $47,000- $57,000. They would be assessed to pay $121.00 per month. The maximum charge for this service is for a single person with net income that exceeds $67,000; they would pay $605.00 per month.
Care under this program is task specific and is assigned to the client an hour at a time. The program is structured and not very flexible. You will be assigned a time of day the care will be given and it must be a task, getting in or out of bed, assistance with meals, bathing. You will not be able to tell them when you want the service so it may be delivered at time of the day that is not convenient for you.
Self Managed Care - This program moves the responsibility for the delivery of care to the person that requires it and gives complete flexibility for scheduling care. You need to go to an administrative orientation. The following are the program requirements:
Create a care plan
Get care plan approved and hours assigned by your Care Coordinator
Get budget of funds based on hours from the Care Plan @ $18.50/hour
Open a separate bank account for Department of Health and Wellness to deposit funds into each month and for you to write cheques from for the staff you hire.
Open a new business with the Registry of Joint Stock Companies
Open a payroll deduction account with Revenue Canada and pay employee/employer monthly remittances
Open an account with the Workers Compensation Board and pay employee/employer monthly remittances
Complete a job description for the care giver you are going to hire
Complete a job advertisement for the care giver you are going to hire
Hire, train, fire, complete Records of Employment and T4’s for all employees.
Complete quarterly reconciliations for the Department of Health and Wellness to ensure that all monies placed in your bank account for this program are only used to pay employees. You will need to provide them with copies of all canceled cheques and bank reconciliations.
You cannot hire a family member.
You can hire a bookkeeper to assist with the administration of the program but it cannot be a family member, you can only pay up to $100 per month and it comes from the established budget of funds for care.
You can pay your employees between $12-14.00 per hour. The other $4.00/hour is for vacation pay and deductions.
You can assign an unpaid care manager to help with the administration of this program
You can keep up to one full month of assessed funds from the Department of Health and Wellness but at such time as you exceed that amount you must return the balance. An example: you are assessed and receive a budget of $2500.00 per month to spend on care. After 3 months you complete your first reconciliation and the bank account, after vacation pay and deductions have been remitted has a balance of $3000.00 because you didn’t need as much care as you had been assessed to need. The additional $500.00 would need to be returned to the Department of Health and Wellness.
Palliative Care - This care program is used for clients with a terminal diagnosis and changing needs for care. The program is flexible, is administered by the Care Coordinator and is used in the last 6 months of a client’s life. Due to the nature of the disease some clients with ALS are referred to the Palliative Care program even though they may not be in the last 6 months of their life. The client will be assessed for up to a maximum 12 hours per day of care at no cost. The clients spouse or care giver is given a budget of up to 40 hours a month respite in addition to this for their personal use.
Medical Palliative Team – Medical Palliative Care is provided through Nova Scotia Cancer Care Center and is located in the Dixon Building. There contact number is 473-6091. The ALS Clinic staff will set up an appointment with this medical team when they feel it is the best time to open a file for your case. This team provides end of life medical palliative care and their goal is to provide medical assistance at the end of life. It is good to get this appointment completed early and then you will be in their client files and be able to access the services they offer. You will meet with a Doctor and Nurse and review where you currently are in the prognosis of your ALS.
The following are some of the items discussed during this meeting:
Counseling is available for the client, spouse or couples
A medical team will be provided to complement your existing care provided by Continuing Care.
This team provides their services from your home or from the hospital.
You have the opportunity to discuss your end of life concerns and establish what you would like to have happen
You are advised to write an advanced directive
You are given the opportunity to take home a DNR order so that those health professionals coming into your home know and can respect your wishes.
Social Media Networks
Harness the Power of Community to Help Others in Need
Lotsa Helping Hands is a free service that brings together caregivers and volunteers through online Communities that help organize daily life during times of medical crisis or caregiver exhaustion. Caregivers benefit from the gifts of much needed help, emotional support, and peace of mind, while volunteers find meaning in giving back to those in need.
Our service can be used in many ways to help loved ones from providing support to a military family and organizing meal trains for parents to coordinating volunteers for your school or religious group, or bringing together volunteers in your town or neighborhood.
From our Help Calendar to Well Wishes Wall, learn more about using Lotsa Helping Hands: Please visit the website for further information: https://www.lotsahelpinghands.com/who-we-help/
Transportation
Metro Transit's Access-A-Bus service is a shared ride, door-to-door, transit service for persons who are unable to use the conventional transit system due to physical or cognitive disabilities and are declared eligible through a registration process. As of August 2010, mobility scooters are allowed on all Access-A-Buses, designated ALF conventional bus routes and ferries. Maximum size restrictions are:
3-Wheel Scooters: 40” L x 21.125” W
4-Wheel Scooters: 40.25” L x 21.25” W
Note: All mobility scooters will require (4) anchors/tie down points to secure the device on the bus. These can be purchased at Lawton's, Harding or any wheelchair/scooter dealer.
To download a registration application, please visit http://www.halifax.ca/metrotransit/access_a_bus_registration.html
Provides door-to-door accessible transportation services to all residents with priority placed on services to seniors, persons with disabilities and those facing transportation barriers.
Fleet consists of five wheelchair accessible vehicles:
One 18-passenger wheelchair accessible bus;
Two 14-passenger wheelchair accessible buses; and
Two 9-passenger wheelchair accessible vans.
Claredon Robicheau, Volunteer Manager
RR # 1, PO Box 175
Church Point, NS B0W 1M0
(p) (902) 769-2477 (dispatch)
(p) (902) 769-2474 (home)
transportdeclare@eastlink.ca
Strait Area Transit is a non-profit charitable organization made up of a volunteer board of directors along with many partners and sponsoring organizations. Our organization was established after extensive consultation with the community that indicated the need for an alternative means of transportation in the area.
Jessica Farrell, Manager
32 Paint Street, Unit 6
Port Hawkesbury, NS B9A 3J8
(p) (902) 625-1475
(f) (902) 625-3633
straitareatransit1@ns.aliantzinc.ca
Transit Cape Breton Handi-Trans
Comfortable, affordable transportation. Transit Cape Breton gets you where you need to go in Industrial Cape Breton. Heading to work or for a day of shopping, our clean, well-maintained buses will get you there conveniently and on time. Come along for the ride!
Handi-Trans
Tel: 902-539-4336
Monday to Friday
8:30 a.m. to 4:00 p.m.
Kings Point to Point Transit
Kings Point-to-Point Transit offers their vehicle for all transportation purposes including trips to the hospital/medical appointments, to & from work/school and for everyday shopping/personal needs. Day trips and field trips are also offered to any destination within Nova Scotia for groups such as seniors’ homes, camps, schools, and others at very affordable rates.
Faye Brown, Manager
14 Aberdeen Street
Box 114, Station Main,
Kentville NS B4N 3V9
(p) (902) 681-2846
(f) (902) 681-2044
manager@kingsparatransit.ca
East Hants Community Rider
Provides accessible transportation services to all residents of East Hants County who face transportation challenges for medical appointments, school, work, personal errands, volunteering and social activities.
One minivan can accommodate two wheelchairs and one passenger, while the other minivan can accommodate one wheelchair and four passengers.
Saran Jarvie, Community Transport Manager
224 Highway 214, Suite 101A
Elmsdale, NS B2S 1J7
(p) 883-4716
easthantscommunityrider@gmail.com
Trans County Transportation Society (TCTS)
It is with great pleasure that Trans County Transportation Society (TCTS) announces our partnership with the Soldiers Memorial Hospital Foundation and the Bridgetown Pharmasave to support reduced fares for a Bridgetown Medical Shuttle service operating from Bridgetown to Kentville and Halifax.
Debbie Decker, General Manager
26 Bay Road
PO Box 193
Bridgetown, NS B0S 1C0
(p) (902) 665-1212
(f) (902) 665-4029
tcts@ns.sympatico.ca
Colchester Transportation Cooperative Ltd. (CTCL)
To establish an efficient, flexible, quality ground transportation service, operating in Colchester County, that meets the needs of all persons. Persons with disabilities, seniors, and non-disabled persons.
Teresa Higgins, Manager/Dispatcher
35 Commercial Street, Suite 201
Truro, NS B2N 3H9
(p) (902) 896-7433
(f) (902) 896-7433
ctcl@ns.sympatico.ca
CHAD Transit is a critical part of the non-profit community in Pictou County. We help the disabled, seniors, and anyone else who is transportationally disadvantaged. These people are taken to hospital appointments, work, grocery store, or wherever else they are required to go to lead a healthy and happy life. Without CHAD, the quality of life for our clients would be severely diminished.
Danny MacGillivray, Operations Supervisor
980 East River Rd., PO Box 853
New Glasgow, NS B2H 5K7
(p) 928-1234
chadtransit@hotmail.ca
Nancy McKinley, Co-ordinator
PO Box 2618
2618, 80 Water St
Windsor, NS B0N 2T0
(p) (902) 792-1802
(f) (902) 792-1801
mlittle@hantscountycan.org
Municipality of Chester Transportation Society Community Wheels
Chester Community Wheels is owned and operated by The Municipality of Chester Transportation Society.Community Wheels provides connections for individuals to downtown Chester and to the area's major medical centres, as well as charter services for groups and organizations.
Sandra Meister, Co-ordinator
23 Collicutt Road,
PO Box 187
Chester, NS B0J 1J0
(p) (902) 275-5585
(f) (902) 275-2249
sandrameister@sswap.ca
Cumberland County Transportation Services Society
The Cumberland County Transportation Service Society (CCTS) is an accessible, affordable, not-for-profit, public transportation service for residents of Cumberland County who are transportation disadvantaged.
Susan Belliveau, Manager
24 Crescent Avenue
Amherst, NS B4H 1V1
(p) (902) 661-1509 (option 3)
(f) (902) 667-4062
ccts@eastlink.ca
Handicapped Organization Promoting Equality (HOPE)
Three wheelchair accessible minivans, which each can accommodate two wheelchairs and two passengers, or one wheelchair and three passengers.
Two seven passenger minivans (non-accessible).
Charter services are also available.
Linda Vickery, Manager
PO Box 562, 84 Main Street
Yarmouth, NS B5A 4B4
(p) (902) 742-8910
(f) (902) 742-1281
hopecentre@ns.sympatico.ca
Travel
All airlines will transport a wheelchair (manual and power) for no charge.
Check in at the airport when traveling in a wheelchair is required 3 hours prior to departure.
If traveling on an aircraft with a power wheelchair the patient must declare the battery type on their chair at the time of reservation.
Certain aircrafts have extendable restroom walls that allow for a caregiver to assist easier (i.e. 747 and larger) .
The baggage tag that is affixed to the wheelchair needs to indicate where the patient would like it to be held for them once they reach their destination (ex. at the gate or at Special Baggage).
The patient can stay in their own wheelchair until they reach the gate for comfort.
Patients must make sure that a special transport chair is going to be on board if they require it during the flight.
Flight attendants are not required to assist a patient in and out of the restroom.
Patients can request special seating with removable arms and closest to the bulkhead portion of the plane.
As of January 11th, 2009 Canadian passenger airlines must provide a complimentary companion ticket for People Living with Disabilities who must be accompanied by an attendant/caregiver. A doctor’s note is required. Contact the airlines for details and booking. For more information go to www.cta.gc.ca .
All prescription medications must be in their original packaging with clear labels or they may be confiscated at security.
Always check for updated restrictions with the airline prior to flying.
If your wheelchair gets damaged in transport by the airline, you MUST file a damage report at the time of the incident. DO NOT leave the airport without doing this first.
Healthy Meal Alternatives
The Frozen Favorites Healthy Meal Program offers delicious and nutritious frozen meals prepared by a registered dietitian. This program provides healthy food choices for people who live alone, renal, pureed and diabetic special diets, chronically ill, those recovering from surgery or chemotherapy or simply for active people on the go! Delivery of meals to your home is available. Please contact your local VON to find out more about this program.
Meals on Wheels- There is no age restriction for receiving Meals on Wheels. Our clients may be elderly or disabled individuals or those recovering from illness, surgery or injury. Meals on Wheels clients cover a wide spectrum of ages and needs. They may require our services for a short time only, or for a longer term. What they all share is the desire for regular healthy and nutritious meals. Please contact your local Meals On Wheels for more information.
Costco Pharmacy- What makes Costco Pharmacy special is people: the people who work for us, and the people we serve. We know that in order to serve you well, we need very knowledgeable, highly skilled people, and enough of them. So when you come in to Costco Pharmacy, you will be coming in to a team of pharmacists, technicians, and pharmacy assistants dedicated to your health care. Costco Pharmacy can order in feeding tube formula such as Iso Source , Resource at a lower cost. The formula has to be purchased by the case and rate between 1.39 – 2.89 per tetra pack. Please multi this by 24 to indicate case pricing.
Stories of Hope – Kathleen Oikle
Putting Others Before Herself – Kathleen Oikle was diagnosed with ALS in January. Kathleen has decided to use her life to raise awareness about ALS. Her family, friends, and community have rallied around her, helping her build a float which she has ridden on in the Apple Blossom, Halifax Natal Day,Gay Pride and many other community parades this summer. Kathleen is seen her hand painting the float with the assistance of a Hoyer Lift loaned to her summer. Kathleen is seen her hand painting the float with the assistance of a Hoyer Lift loaned to her by ALS NB NS.
AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF
NEW BRUNSWICK AND NOVA SCOTIA
Enrolment Form (Confidential)
Personal Information
Surname:
|
⃝ Mr. ⃝ Ms. ⃝ Mrs. ⃝ Dr.
|
First Name:
|
Sex: ⃝Male ⃝ Female
|
Middle Name:
|
Date of Birth (M/D/Y):
|
Address:
|
|
City:
|
Business #:
|
Province: Postal Code:
|
Home #:
|
Email:
|
Cell #:
|
Primary Alternate Contact Person
|
|
⃝ Spouse ⃝ Partner ⃝ Parent
|
⃝ Son ⃝ Daughter
|
Surname:
|
First Name:
|
Address:
|
|
City:
|
Business #:
|
Province: Postal Code:
|
Home #:
|
Email:
|
Cell # :
|
Share with your friends: |