January 2016 The als society of nova scotia advisor



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January 2016

The als society of nova scotia advisor




You Are Not Alone!

ALS NB NS has the information and resources you need to get the most out of your life.

(902) 454-3636 Phone

www.alsnbns.ca

tcooper@alsnbns.ca

About Us

The ALS Society has been serving people living with ALS (PALS) and their caregivers (CALS) for over 25 years. Our founding members – Brian Smith and Maureen Hope realized that people living with ALS needed practical information and assistance accessing expensive equipment required to maintain independence and mobility. The Society is a non-profit organization and is not funded by any level of government. We appreciate and recognize all those who support our work financially.

We are governed by a volunteer Board of Directors, supported by a small staff. All are dedicated and passionate about helping PALS live as well as they can, as long as they can.

Although our office and equipment warehouse is based in Dartmouth, we serve all of Nova Scotia and New Brunswick.



The First Steps

If you are reading this you have either been diagnosed with ALS or are in the process of being tested for ALS. Understandably, you are feeling shocked, overwhelmed, and full of anxiety.



There are three things you need to know right away:

  1. You still have life ahead of you – yes, there are challenges that will need to be faced and overcome but there is still joy and love and beauty in life.



  1. You may have ALS but ALS doesn’t have you. You can do amazing things!

  2. It is important to work with your medical team, your family, friends, and the ALS NS NS to maintain your independence, to keep up with volunteer work, to travel, to do many of the day to day things you do now.

There is one thing you need to do today:

  1. Complete the enrolment form.

By completing this enrolmet form you can access the services of the ALS Society. There is no charge at any time for the services of the ALS Society.

Over the next few weeks:

  1. Knowledge is power and will help you and your family cope with stress and ultimately the changes you will need to deal with. The ALS Advisor, the ALS Manual, and the ALS Society of Canada are all great sources of information.

Awesome Advisory: Some people will want to know every single fact as fast as they can absorb it. Others will want to take things more slowly. You know yourself better than anyone else. Do what feels best for you.

ALS Society of New Brunswick and Nova Scotia

www.alsnbns.ca (902) 454-3636

tcooper@alsnbns.ca

ALS Champion – Terri Cooper

We’re on Facebook – ALS Society of New Brunswick and Nova Scotia

ALS Society of Canada

www.als.ca



Awesome Advisory: Contact the ALS Society of Nova Scotia for information about accessing health care, for the Equipment Loan Program and for general guidance and support. Visit the ALS Canada website to download fact sheets and other disease and research information.

The ALS Advisor

Our hope is that the ALS Advisor will be a practical resource, helping our PALS and their family access all the health, homecare, and other services they will need in the coming months and years.

Throughout the Advisor you will see Awesome Advisories (helpful hints that our PALS have learned along the way) and Stories of Hope (real people that have lived or are living with ALS).

The ALS Advisor will be updated quarterly for the first 24 months it is in use and annually thereafter. Should you have any suggestions for the content, please contact our Client Services Manager, Terri Cooper clientservices@alsns.ca. Thank you.



Our Values

  • Advocacy – ALS NB NS is a strong voice for ALS care, policies, research and personal empowerment. ALS sufferers are people first, patients second.




  • Knowledge – ALS NB NS draws upon the competence, skills and knowledge of ALS experts, including researchers, healthcare providers and most importantly, the ALS patient and families themselves.




  • Time – ALS NB NS believes that every moment maters.




  • Inclusion – ALS NB NS encourages ALS patients and families to be integrated and connected.



  • Choice – ALS NB NS empowers ALS patients and families to be powerful and independent decision makers for their own best life.

 

Table of Contents

Introduction About Us, First Steps ……………………………………………………………………………….. Page 1

ALS Advisory, Our Values, Equipment Loans Program ………………………………………………….. Page 2

Table of Content …………………………………………………………………………………………………………. Page 3

Other Organization ……………………………………………………………………………………………………….. Page 4-5

Stories of Hope ……………………………………………………………………………………………………………. Page 6

Financial Assistance ……………………………………………………………………………………………………… Page 6-7

Insurance Coverage ……………………………………………………………………………………………………… Page 7-8

Veterans Affairs …………………………………………………………………………………………………………… Page 9

Health Care, AL Clinic, ALS Patient Registry, Self- Referrals, Tele-Health ………………… Page 9-11

Alternative Therapy ………………………………………………………………………………………………………. Page 11

Community Occupational Therapy/Physiotherapy ……………………………………………………….. Page 12

Health Authorities ………………………………………………………………………………………………………… Page 12-13

Homecare & Independent Living …………………………………………………………………………………… Page 14-18

Stories of Hope ……………………………………………………………………………………………………………… Page 15

Social Media Network …………………………………………………………………………………………………… Page 19

Transportation ……………………………………………………………………………………………………………… Page 19-23

Travel …………………………………………………………………………………………………………………………… Page 23

Stories of Hope ……………………………………………………………………………………………………………….. Page 24

Meal Alternatives …………………………………………………………………………………………………………….. Page 24



Client Registration ………………………………………………………………………………………………………….. Page 25-27

Equipment Loans

The Equipment Loan Program is designed to help people cope with the daily challenges of living with ALS, by access to an Equipment Loan Program.

The ALS Society of NB-NS is a non-profit organization entirely funded by the generous donations of the people of New Brunswick and Nova Scotia.
There are no charges for any services offered by the Society including the Equipment Loan Program. The Society does not conduct needs testing because of the financial challenge of loss of employment; often for both the person living with ALS and their family members/caregivers.
There is a wide variety of equipment available for people living with ALS and there are many options to help people remain comfortable, safe, communicating and mobile. The options to keep someone living well with ALS range from very basic equipment to high end, high tech options. An example might be communication equipment which can range from a homemade letter board to a $20,000 communication device. ALS NB-NS’s goal is to be able to provide a basic level of service/equipment for every person diagnosed with ALS in our provinces. That means that every person living with ALS can breathe, is mobile, can communicate, is safe. From time to time because of donations the Society is in a position to offer enhanced services or equipment.
The equipment loan pool consists of: mobility equipment (manual and power tilt wheelchairs, walkers, scooters), basic communication devices,respiratory equipment,bath assist equipment,hospital beds.
This is a recycled equipment loan program.  That is, our equipment serves more than one person and is used several times.  It is cleaned and sanitized between uses and maintained by professionals when required. 

 

We obtain equipment by purchasing new pieces when funding allows, by assisting with co-payment of insurance deductibles, and donations.

 

We loan the equipment out free of charge with no needs testing.  Sometimes, however some auxiliary, one person use accessories/services will need to be paid by the person to whom it is loaned.  For example; if you require a bi-pap machine (for breathing) you will be required to pay for the mask and for the professional vendor that will be required to teach you how to use the machine and to do set the levels.   This may cost a few hundred dollars which can be difficult during this time but having the bi-pap machined loaned free of charge will save someone living with ALS approximately $5,000.   Sometimes it is necessary when you receive a power tilt wheelchair to have a vendor come to your home to modify the chair specifically for your body and program the speed and other features to your individual needs.  This may also cost about $200.  A typical power tilt-wheelchair is usually valued between $12,000 and $30,000.  To aid the Society in helping as many people as possible, we ask that as much as possible the charges described above are paid by person/family to whom the equipment is loaned. However, when it absolutely not possible, the ALS Society will on a case by cases basis consider taking care of these fees when the budget is available to do so.

 

As our organization grows and as awareness grows, we will be able to expand our equipment loan inventory and the services we provide.
With the progression of ALS, your equipment needs will change. We encourage you to keep your appointments with your healthcare team as much as possible so that you can be assessed regularly and that upcoming equipment needs can be ordered for you in a timely manner.
The Society does not loan out equipment for trial as it cost prohibitive to do so. To deliver a power tilt wheel-chair for example may cost up to $600 in administration, labour, and delivery costs. We encourage you to talk to your health care team member and prepare yourself emotionally to accept the equipment before it is delivered. This helps us keep the cost of our loan program at a level where we can help as many people as possible.
Solid, open, and honest communication between a person living with ALS and their family members/caregivers is essential. Sometimes, the person living with ALS may not be ready to accept for example – a new wheelchair. The caregiver and healthcare team member may be encouraging the use of a wheelchair. The caregiver may need some relief from assisting with mobility. The healthcare professional may know that you will do better if you accept a wheelchair. All members of your team need to communicate well and respect the needs and expertise of each other. This will ensure that you have the right pieces of equipment at the right time and reduce the stress of all involved.
Except in the case of breathing equipment which is delivered within 24 hours if at all possible, requests for other pieces of equipment are processed on a first come, first serve basis. The turn-around time for equipment is 2 – 6 weeks to allow for proper sanitation, regular maintenance, and inventory control.
It is helpful when you are require one piece of equipment to have a conversation with your team about other equipment that may be required in the near future. This practice also assists in keeping our costs low.
The ALS Society of NB-NS makes every effort to deliver the equipment as prescribed by your health care team. We cannot guarantee the exact manufacturer and model as requested is delivered but we try to fill the prescription as close as possible to your needs. For example, we might substitute one brand of wheelchair for another but we will attempt as much as possible to meet the measurement and accessory requirements.

  • Canadian Red Cross

For more than 50 years the Canadian Red Cross has been offering Health Equipment Loan Programs. The Nova Scotia Region of the Canadian Red Cross includes eight full-time Service Centres located in Amherst, Antigonish, Bridgewater, metro Halifax (Burnside), Kentville, Sydney, Truro and Yarmouth.

Through the HELP program the Red Cross provides more than 50,000 pieces of health equipment to Atlantic Canadians every year, ranging from crutches and canes to specialized equipment such as wheelchairs. In Nova Scotia, the Red Cross also provides hospital beds for recovery or palliative care at home for individuals determined to be eligible after an assessment by care coordinators with the provincial Department of Health.

Other programs under the Community Health umbrella continue to flourish. Home Support Services are provided to clients in Nova Scotia.

For further information:

http://www.redcross.ca/article.asp?id=4987&tid=078

http://www.redcross.ca/article.asp?id=23801&tid=078

http://www.redcross.ca/article.asp?id=4987&tid=078

Awesome Advisory: Most of the time, the ALS Society will be able to assist you with the loan of equipment. Other agencies are listed here should there be a wait list or should there be pieces of equipment the ALS Society does not provide.


  • Society of Deaf and Hard of Hearing

The Society for the Deaf and Hard of Hearing Society has in the past loaned TTY systems to PALS unable to use their voice and has indicated that they will continue to do so should their client’s needs be met.

A TTY system allows the user to place a phone call and then communicate through written text, rather than spoken communication. Systems include a telephone handset that is attached to a keyboard; each key makes a specific tone that can be read by the handset. The handset communicates those tones to a receiver on the other end of the line, and the receiver interprets the tones and generates a line of text.

Obviously, when someone places a call with a TTY system, they need to be certain that the recipient also has one. If the recipient has no TTY receiver, he or she will pick up the phone and hear a series of tones. In a situation where someone with a system needs to call someone without one, or vice versa, a telephone relay service is used. The relay service can read typed messages to callers who can hear, and turn spoken messages into text for deaf and hard of hearing callers.

Society of Deaf and Hard of Hearing Nova Scotians - Two Locations

56 Nepean Street 117

Sydney, NS, B1P 6A8

(902)564-0003 (voice/video phone/fax)

cbdeaf@ns.sympatico.ca
Society of Hard of Hearing for Nova Scotians

1657 Barrington Street

Halifax, NS, B3J 2A1 (902) 422-7130 (voice/videophone/tty)

(902) 564-0486 (TTY) (902) 492-3864 (fax)

1-888-770-8555 (toll free) 1-800-516-5551 (toll free)

Website:www.sdhhns.org

Email: sdhhns@ns.sympatico.ca


  • Easter Seals

Easter Seals Nova Scotia’s programs and services are directed to real needs in our communities: to help children, teens, and adults with physical disabilities to become more active, build independence and confidence, and gain access to equipment and information.

Wheelchair Recycling Program

In partnership with the Nova Scotia Department of Community Services, uninsured Nova Scotians aged 64 years or younger who meet the program criteria may obtain a wheelchair based on a medial prescription from a health care professional.



Contact Tamara Purcell, Wheelchair Program Assistant at (902) 453-6000, ext. 229 /Toll free at 1-866-554-4527 or email: wheelchairs@easterseals.ns.ca or visit the website to download an application form at:

http://www.easterseals.ns.ca/programs-and-services/assistive-devices/

  • Veterans Affairs Benefits

If you are a veteran living with ALS you are also entitled to have equipment funded through their benefit program. Please see page 7 for further information.

Stories of Hope – Mike Watson

A Family Man Speaks for Veterans – Mike Watson and his Family are not defined by ALS. For reasons not yet understood veterans experience a higher incidence of ALS but until October 2010 were not awarded medical benefits as a result of service. Mike Watson has been living with ALS for 8.5 years. His family - wife Brenda and teenage daughters Kim and Michelle traveled the Maritime provinces and to Ottawa to advocate for others living with ALS! Kim personally told the Prime Minister what it was like to have a parent with ALS. Mike was an integral part of a team that helped veterans with ALS receive benefits in 2010. To date over 70 veterans and their families have received benefits.

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