Advocacy

Need some support at school this year?

  

Seek advice from people with experience.

Other parents can provide ideas that could help guide you through the school system, even if their child’s issues are different than yours. Community and government organizations can provide contacts to parents and information about support services and educational policies. Some organizations you may wish to contact include:

  • BC Federation of Parent Advisory Councils 604-687-4433 www.bccpac.bc.ca   A non-profit organization that advocates for the best possible education for all children in BC, through the active involvement of parents.
  • Learning Disabilities Association 604-873-8139  www.ldabc.ca/
    Provides programs and services including tutoring, advocacy, and education about learning disabilities.
  • Family Support Institute 604-540-8374 www.familysupportbc.com
    Provides parent-to-parent support and advocacy for families of people with disabilities, as well as resources, information, and workshops.
  • BC Association for Community Living 604-777-9100 www.bcacl.org  For all individuals with developmental disabilities. Some nice resources and links to Transitions and Inclusive Education.
  • Community Living BC 604-664-0101 www.communitylivingbc.ca
    Delivers support and services to ELIGIBLE individuals with developmental disabilties and their families. This includes transition planning to adult service in partnership with the Ministry of Children and Family Development. Good FAQs on eligibility and programs and services for adults with developmental disabilities.
  • Ministry of Children and Family Development 250-952-6044 www.gov.bc.ca/mcf/
    Services include a range of child, youth, and family focused support programs and interventions to help promote.  All are eligibility tested.
  • Federation of Independent School Associations 604-684-6023 www.fisabc.ca
    An umbrella organization for independent schools in BC. Acts as a liaison between the schools, government, and other educational institutions.

SMART IEP links

  

The best type of IEP goals are SMART or:

S  Specific

M Measurable

A  Action words are used

R  Realistic and Relevant

T  Time limited

Some links to how to write effective Individual Education Plan goals:

Comprehensive overview of SMART IEPs: http://www.wrightslaw.com/bks/feta/ch12.ieps.pdf

Ideas for SMART goals:

http://www.bced.gov.bc.ca/specialed/docs/iepssn.pdf

You should also connect with the local, national and international organizations that represent your child’s special need.  These organizations will have disability-specific hints and tips for you, your child and your family.

Trouble navigating the disability system?

  

Our Disability Benefits Navigator allows you to quickly find what you might be missing: http://www.abilitytax.ca/navigator/home.html

 

 

 

 

IEPs… What do I need to know?

  

*updated 2012*

The IEP (Individual Education Plan)is an important way to get input into your child’s education. The important thing to know is that as a parent have a right to participate in the IEP process.

An IEP has three stages:

  1. developing and writing the plan
  2. implementing and evaluating the plan
  3. reporting on student progress toward the goals in the plan

This is an evolving process: as the student’s needs change, the IEP should change.  

Your school district will most likely have a "template" for the IEP that they would prefer to use.  Remember, these are just guides to make the process easier.  Ask for a change if you do not like the template that is offerred.

 

Learn about Student Support Services in your district:
Student support services could include: learning assistance, counseling, physiotherapy, occupational therapy, or speech-language services. However, these may or may not be applicable to your child.

Different school districts may name or deliver their support services in slightly different ways. For information on school district services start by looking at your district website:

http://www.bced.gov.bc.ca/schools/bcmap.htm

 

The Basics of the IEP:

The British Columbia Ministry of Education provides some basic information about IEPs that you can reference to get started.  There is also a Ministy resource page that has some disability specific suggestions and guidelines. Make sure you understand the difference between adaptations and modifications.

Some good basic guides:

BC Association for Community Living Parent’s Handbook on Inclusive Education.

BC Confederation of Parent Advisory Councils: Individual
Education Plans A Guide for Parents

BC Ministry of Education: A Resource Guide for Teachers

Making the IEP work:

The core of the IEP is the goals. Once there is an IEP in place, you also need to think about what your child needs to support the outcomes in the IEP in terms of support: Education Assistant (EA), speech therapy, augmentative communication resources or behaviour and communication support.

Go to the IEP meeting prepared by knowing what you want and be prepared to ask for it. You may have to request a formal meeting to resolve differences.

 


This year, get organized!

  

Wondering if getting organized is worth your time? Here are a few fun statistics to help you decide:

  • Getting rid of clutter eliminates 40 per cent of housework in an average home.
  • 23% of adults say they pay bills late (and thus incur fees) because they lose them.
  • Eighty per cent of the clutter in homes is a result of disorganization, not lack of space.

(Survey results from Ikea and the National Association of Professional Organizers)

 

PLUS, as the parent of a child with a disability, you will feel very powerful when you can put your hands on critical information and documents when you need them!  If you have a child with a disability the paperless society is still a long way off, you will accumulate paper, paper and more paper.    Attending a meeting? You might be asked to bring a document that you last saw on your kitchen table 3 months ago.  Where is it now?

First, pick an organization system you are comfortable with.  If you don’t like punching holes in paper don’t use a binder system just because your friend does it that way. 

Try experimenting with ideas you find on-line or that other parents have used and see what works for you.  At home I use a simple system of a few active files which I keep handy in an open file holder. Once or twice a year I file older items but I always keep current documents like IEP’s or assessments on hand.  Get a filing cabinet or a storage box and use it for old documents that you may need again but be ruthless and  THROW OUT outdated information. 

Some people have been successful with accordian-style paper holders.   You can buy these with many or only a few sections, it depends on your family’s needs.

Try Googling "Organization systems", "Get organized now" or "personal organization".  There must be a million ways to get organized and I think they are all on the internet! Look for good hints and tips, you don’t need to spend money for a fancy system.

A  few places to start:

Binder system (make your own):

Find lots of examples and links to sites for templates:

http://www.medicalhomeinfo.org/for_families/care_notebook/

Vermont Family Network Care Notebook:  "Parents can purchase the
necessary components of a Care Notebook themselves at any office supply store",  and this site includes downloadable templates.

http://www.vermontfamilynetwork.org/i-need-help-with/health/care-notebook/ 

Start the school year out right and get organized early.

Have an opinion about BC Children’s Hospital? Get involved!

  
Volunteer in Your Pajamas!  Become a Part of Our Virtual Focus Group!
  • Email communication only.
  • Projects take no longer than 5 – 10 minutes.
  • Contribute at your leisure – day or night.
  • Only choose projects you want to participate in.
  • All comments and identity will be anonymous (unless you give permission to use your information) when we share the results of our surveys with various departments / administration.
  • Withdraw from the group at any time.
  • Be confident that your child’s care will not be affected by your participation in or withdrawal from our group.
Why Should I Join?
  • Help the Partners in Care Family Advisory to give a broad family perspective of hospital issues and initiatives.
  • Help the Partners in Care Family Advisory effect change with regard to hospital programs and decisions made by hospital administration.
  • Gain satisfaction in knowing by your family voice you can make a difference in the services that BCCH provides.
  • Have the joy of "giving back".
  • Know that you’re helping make the hospital a better place for other families.
  • Please join us as a Virtual Focus Group Member and use your experience to benefit all patients and families who use BC Children’s Hospital!
For more information about Partners in Care and about your role as a Virtual Focus Group Family Member please contact the Partners in Care Family Liaison:
Susan Greig 
BC Children’s Hospital
Room 3D19, 4480 Oak Street
Vancouver, BC  V6H 3V4
Phone:  604-875-2345  Ext. 5391 
Email: sgreig@cw.bc.ca
See also the Partners in Care (PiC) blogsite at:

BEDBUGS! What are they and what to do!

  

Bedbugs were once a common public health pest worldwide, which declined in incidence through the mid 20th century. Recently however, bed bugs have undergone a dramatic resurgence and worldwide there are reports of increasing numbers of infestations. Bed bugs are one of the great travelers of the world and are readily transported via luggage, clothing, bedding and furniture. As such, they have a worldwide distribution.

Some Basic Facts:
Bed bugs are persistent. Eradicating, exterminating or just killing an entire infestation requires persistence.
Bed bugs can hide in extremely small cracks and crevices making it difficult to locate breeding sites.
Bedbugs are rarely seen in daylight. They emerge from their hiding spots at night.
Bed bugs can live a year or longer without food (blood) and thus stay in their hiding places.
Bed bugs can travel long distances and survive in suitcases, clothing, vehicles, aircraft, cruise ships and other modes of transportation.
Bed bug females lay about 300 eggs.
Bed bugs hatch from eggs in 10 days.

Bed Bug Bites:
Bed bugs feed by piercing skin with an elongated beak. Saliva is injected, containing an anesthetic to reduce pain, and an anticoagulant to keep blood flowing. The reaction to bed bug bites varies among individuals, from no reaction to sever skin inflammation and irritation.

How to treat bites:
The redness and itch associated with bedbug bites usually goes away on its own within a week or two. You might speed your recovery by using:
A skin cream containing hydrocortisone
An oral antihistamine, such as diphenhydramine (Benadryl)
If you develop a skin infection from scratching bedbug bites, your doctor may prescribe an antibiotic.

Treating your home:
Once your symptoms are treated, you must tackle the underlying infestation. This can be difficult because bedbugs hide so well and can live for months without eating. Your best bet may be to hire a professional exterminator, who may use a combination of pesticides and nonchemical treatments.
Nonchemical treatments may include:
Vacuuming. A thorough vacuuming of cracks and crevices can physically remove bedbugs from an area. But vacuum cleaners can’t reach all hiding places.
Hot water. Washing clothes and other items in water at least 120 F (49 C) can kill bedbugs.
Clothes dryer. Placing wet or dry items in a clothes dryer set at medium to high heat for 20 minutes will kill bedbugs and their eggs.
Enclosed vehicle. If it’s summer, you can bag up infested items and leave them in a car parked in the sun with the windows rolled up for a day. The target temperature is at least 120 F (49 C).
Freezing. Bedbugs are also vulnerable to temperatures below 32 F (0 C) but you’d need to leave the items outdoors or in the freezer for several days.
Some professional exterminators use portable devices to produce steam, heat or freezing temperatures to kill bedbugs. In some cases, you may have to throw out heavily infested items such as mattresses or couches.

MORE RESOURCES & INFORMATION

BC Tenant Resource and Advisory Centre, Tips on Bedbugs:

http://www.tenants.bc.ca/main/?bedbugs 

Vancouver Coastal Health: 

http://www.vch.ca/your_environment/pest_management/bed_bugs/bed_bugs

North American Bed Bug Registry:

http://bedbugregistry.com/ 

GLOBAL National August 12,2010: 

http://www.globalnational.com/story.html?id=1382550

 

 

Cuts to Medical Coverage = fewer dentist visits

  

Cuts to Medical Coverage and Minimum Shelter Allowance

FromBC Coaltion for People with Disabilities

Following the March 2nd budget, the Ministry of Housing and Social Development announced it will be making a number of cuts to the health and medical services available to people receiving provincial disabilitybenefits and income assistance. The BC Coalition of People with Disabilities (BCCPD) is very concerned about the impact that these changes will have on our community.

We are also disappointed at the lack of community consultation about these cuts. If you share our concerns, we invite you to write to Minister Coleman and your MLA. You can find your local MLA and Minister Coleman’s contact information by going to http://www.leg.bc.ca/Mla/3-1-1.htm.

The BCCPD is currently reviewing the new regulations in order to provide you with detailed information on the changes. In the meantime, here is a very brief list of some of the changes which will come into force on April 1st (unless we have indicated a different date).

Medical Equipment and Supplies

A broad range of medical equipment and supplies will no longer be funded by the Ministry. Those that will be funded must be the cheapest appropriate to the person’s needs and are listed in the regulations. Here are some examples of items that the Ministry will no longer fund:

  • diagnostic testing devices such as glucose meters
  • contraceptive devices (for example, IUDs)
  • pre-made orthotics.

Restrictions

In addition to changes to what the Ministry will fund, there will be restrictions, for example on:

  • how often the Ministry will repair or replace equipment
  • how much money the Ministry will spend on each item of equipment. For instance, motorized scooters valued at more than $3,500 will not be funded. To be eligible for a motorized scooter, a physician must say the applicant won’t need a wheelchair for 5 years.

Monthly Nutritional Supplement (MNS)

The eligibility requirements for the MNS have been tightened. For example:

  • loss of bone density will no longer count as a symptom
  • significant weight loss not significant weight change will be used to determine eligibility.
  • applicants will be required to demonstrate they have at least two symptoms, rather than one which is currently the case.

The MNS will be reduced by $20 because the Ministry will no longer fund bottled water. People currently receiving the bottled water supplement will receive it until May 31st 2010 only.

Medical Services: Time limits and Income-Testing

  • People with disabilities who leave assistance when they turn 65 and go on to the seniors’ pension, or people who leave provincial disability for Canada Pension Plan Disability will only keep their medical and dental coverage for one year, rather than permanently as is currently the case.
  • People with disabilities who leave assistance for employment will only keep their medical coverage if they are receiving Premium Assistance from the Medical Services Plan.

Dental Treatment

  • Cleaning, examinations and fluoride treatments will be reduced to once a year (currently twice a year).
  • X-ray coverage every 2 years (currently every year).

Shelter Allowance

The $75 monthly Shelter Allowance for people who don’t pay rent is eliminated as of June 1st 2010.

 

Battling red tape: Tips to success in dealing with government agencies

  

Are you being forced to switch your Autism Funding to the Invoice method?  Being audited by the Autism Unit and have been told you owe them money?  Don’t be discouraged in dealing with this or other government agencies such as Housing & Social Development or Canada Revenue Agency- you CAN come out on top.  Here are a few simple methods I have used with great results:

– When calling the department to discuss your file always be polite.

– Request and write down the name of the person you’re talking with.

– If you disagree, ask to speak to the supervisor (write down their name too!).

– Ask for information about their appeal process (almost ALL decisions can be reviewed!)

– If you are still unsatisfied, contact your local Member of the Legislative Assembly (MLA):

http://www.leg.bc.ca/Mla/3-1-1.htm

…and ask for an appointment to discuss your problem.

– Contact the BC Coalition for Persons with Disabilities:

Advocacy Access Program
Phone 604-872-1278; Toll Free 1-800-663-1278

- DON’T GIVE UP!  BACI has an advocacy committee and family support groups that may be able to help you!

Self-advocacy can be time-consuming and frustrating at times.  But from personal experience, I can assure you that if you are firm and ask for help from your community you can cut through red tape!

 

Tips on Home/Residential Care for Seniors

  

I recently read some good information about considerations with Home Care in British Columbia by the Greater Vancouver Community Services Society in the Vancouver Sun written by Ron McLeod. If you have questions you can contact him at 604.737.4900.

At the same time, in the Vancouver Sun, the BC Ombudsman says that seniors deserve a bill of rights. The Ombudsman also said that it is a complex system and it is confusing for seniors. For more detail please see the Ombudsman’s Report.

The Vancouver Sun also has a database with the ratings of facilities.