New Zealand "...Alcohol Healthwatch Director Rebecca Williams says while the Government has initially committed around $12 million over the next three years to implement the FASD Action Plan, this study shows that this pales in significance when the costs of FASD are considered..." http://www.scoop.co.nz/stories/GE1608/S00088/fetal-alcohol-spectrum-disorder-the-economic-cost-revealed.htm Scoop Fetal Alcohol Spectrum Disorder: the economic cost revealed Friday, 19 August 2016, 12:38 pm Press Release: Alcohol Healthwatch Alcohol Healthwatch says a new report revealing the hidden costs of FASD shows more needs doing to reduce alcohol consumption. Dr Brian Easton and colleagues have undertaken the first study ever to ascertain some of the economic implications of Fetal Alcohol Spectrum Disorder (FASD) in New Zealand, the harm that alcohol can cause during the course of prenatal development. Their paper, 'Productivity Losses Associated with Fetal Alcohol Spectrum Disorder in New Zealand', published in the New Zealand Medical Journal today, is timely with the Government just releasing the first ever strategic plan to address FASD. The 'Taking Action on FASD: An Action Plan 2013-2016', launched earlier this week, points out the damage alcohol can cause to unborn babies and the initial steps the Government can take to begin to reduce the risks and harm. The Government estimates that FASD may be costing New Zealand around $800 million annually if one percent of the population is born affected. At this rate of prevalence, Easton and colleagues' research reveals that FASD would result in losses to the New Zealand market production of between $49 million and $200 million each year. Alcohol Healthwatch Director Rebecca Williams says while the Government has initially committed around $12 million over the next three years to implement the FASD Action Plan, this study shows that this pales in significance when the costs of FASD are considered. "This is only one area of economic burden of this preventable disorder. Those individuals and their families affected by FASD understand its real cost, much of which cannot be counted or measured." Williams says she commends Dr Easton and his colleagues for shedding light on such an enormous and hidden burden that has been ignored for far too long. "If we are serious about reducing the overall burden of alcohol on society and in individual lives then we need a greater focus on evidence-based policy and greater investment. The FASD plan is a step in the right direction but women's consumption of alcohol is influenced by the wider environment awash with cheap, easily accessible alcohol and aggressive marketing," she says.

Ends. Productivity Losses Associated with Fetal Alcohol Spectrum Disorder in New Zealand is an open access publication on the New Zealand Medical Journal website www.nzmj.com. __._,_.___ The research and government policy on costs of FASD do not include the daily costs to those with FASD and the families who support them. The following is from Faslink, an FASD support forum. Barry Stanley FASD COSTS – APPLICABLE TO ANY FAMILY OR PROSPECTIVE ADOPTION ELECTRONICS

• Cost of computers, cell phones and tablets (and replacement of same from time to time) • Cost of providers for electronics – to connect for support /research etc. • Books, journals to self educate and educate others and awareness of new techniques and

services • Cost of special Education aids, i.e phones for impaired hearing, tape recorders, etc.

EDUCATION

• Cost of a full time EA and school supports • Cost of transportation to and from school if privately transported • Cost of aide on bus • Cost of Tutoring either after school or when not able to attend schools • Cost of Home Schooling • Cost of Private school if unable to meet needs in public system • Cost of Educational Consultant fees re education, IEP, disability accommodations, unrealistic

modified school days, i.e. 2 hrs over extended periods, even years. etc.

EMPLOYMENT COSTS

• Cost of coaching for disabled one • Extra vehicle costs, • Cost of employment loss due to calls from disabled one • Cost of “mishandled” funds, goods etc” • Cost of a coach • Cost of “unwell “ days

FOODS and/or DIETS

• Cost of special foods due to food allergies, sometimes many food allergies. • Cost of special diets (allergen, gluten, etc free • Dietary supplements (vitamins, minerals, digestive etc) OR • Alternative diets (gluten free, Feingold,

LEGAL COSTS

• Attorneys • Probation Fees – attending and community service work, attending required programmes • Cost of defending against false accusation and impact thereof. • Cost of legal persons to defend the adult with FASD who raises their own child/children • Cost of Therapy or other requirements to complete probation • Cost of defending and resolving claims by Credit and Collection agencies • Cost of deterring likelihood of becoming an offender • Cost of appeal (s)

MEDICAL / DENTAL / OPTICAL / HEALTH CARE

• Cost of Prescription medications • Cost of Non prescription medications and supplements – i.e. melatonin, magnesium, choline,

essential oils • Cost of Bladder supports • Cost of Therapy ( if and when such can be found)

• Extra dental care because personal hygiene is a problem or birth malformations.i.e. Orthodontia because of micro or macronathia

• Cost of government dental and vision benefits (as they end up on government assistance versus having an employment benefits plan when they are adults)

• Costs of hospitalization., anesthesia responses, dental under anesthetic , reactions to medications

• All the specialized meds not covered by plans ie epi-pens that expire regularly (@$90) • Personal health issues and cost to clinics, doctors etc • Cost to clinics arising from frequent visits • Fees to obtain all the additional specialized services like trauma counselling, art therapy, OT

PT speech and language etc. • Cost of specialized practitioners who cost a lot more for any procedure Cost of Insurance

(Medical/Dental,Optical, Health etc) when same are available • Cost of above when no medical coverage is available

RESTITUTION / REPAIRS/ RENTAL HOUSING

• Costs to repair damages to the home (for example, hole in wall) and due to what we might usually call carelessness" (such as cleanup and repairs due to flooding because water was unintentionally left running, fixing the damage due to a job done with good intentions but alas done incorrectly, etc

• There are also damages to property flower beds, swim pools fences shrubs etc or to self (broken bones in hand) due to anger outbreaks, etc.

• Costs of increased or extra utility bills because windows are left open with the heat running, lights are left on even when going to sleep, etc

• high telephone bills from long distance calling to procure services • The cost of accommodation - repairs in childhood; renovation, rent in adulthood • Cost of being guarantor on home rentals, vehicle purchases etc.

SERVICE ANIMALS/THERAPY PETS

• Cost of training service animals • Cost of care and feeding of service animals • Cost of any damages to property or persons (liability insurance) • Cost of vet fees, medicines, shots and so forth • Cost of boarding fees • Cost of licences,,tags to meet government requirements.

SUPPORT SERVICES

• Emotional Regulation (yoga, meditation, mindfulness, DBT dialectal behavior therapy, training, addiction , psychiatrist, psychologist )

• Sensory Supports – room darkening, noise reduction, lighting modification, white noise , timers, heavy blankets, jackets, chewable “worry” items, bean chairs, bouncing balls etc.

• Costs of supporting -financially, legally, emotionally and with endless time demands, the adult with FASD who raises with help their own child/children. Cost of support workers, they need 24/7 one to one support . (In order for them to participate in any activity or outing they need well trained and paid support.

• Cost to hire someone to ‘shadow’ them so they can participate in community recreational and social activities Cost of respite support for caregivers (if they are able to obtain)

• Cost of obtaining an assessment or diagnosis. Trained professionals in FASD are somewhat few and far between depending on where you live

• Cost of making reams of copies for all those service providers including schools • Cost of residential treatment facility fees • Transportation costs

o - to clinics, doctors etc o - as an adult - from bus fares to a vehicle, if you can afford it. o - Insurance for transport and accommodation.

o – requirement for 2nd and/or modified vehicle • Cost of attending conferences, workshops • Cost of fees to “belong” to associations etc.

SOCIAL IMPACT AND OTHER COSTS

• Never being able to work - personal lost income and pension potential.... • Countless hours of research, training, advocacy - in the face of significant denial and

disbelief • As an adult - from bus fares to a vehicle, if you can afford it. • Cost of cancelling planned holidays • Non-financial costs - life ling friends who abandon you because they perhaps feel your kids

are somehow contagious • Alienation from families who criticize instead of understand • Emotional impact • The custodial parent loses the income from paid work and has an 85% probability of dealing

with little or no child support or alimony payments. They also lose any contributions to savings, retirement investments, and pensions including CPP.

• The affected child will likely live on social assistance (or the street or jail), losing the quality of life and standard of living that would otherwise be expected. In today's society, under normal circumstances, children will achieve at least the level of education of their parents, and likely one step higher. Lost income potential can be easily calculated.

• The loss of income for caregivers was noted, but there is also the loss of government income taxes associated with the lost income and wages for caregivers as well as the individual with FASD who is not able to work.

• My son is now 25 and is able to work part time, even with a normal IQ, a HS degree and a certification in HVAC - full time employment is hard for him.

• Ongoing expenses for room and board and prescriptions and car insurance and health insurance

• All the years of growing up, his adopted brother who is "typical" came to resent the amount of time his brother took and the differing expectations for behavior and school work given to them.

• After I am no longer able to do so, someone will have to be hired to look after or look in on my son to make sure he is taking care of daily living tasks and managing his finances appropriately. You will need to plan for that expense in their adult years.

• I see growth over time and he more typical than atypical, but it has beena long haul. • No one on this list would tell you they regret having their FASD kids in their lives, but please

do be aware this is a commitment of enormous proportion and you need to go into it eyes wide open. My son showed very few signs of being atypical until he was closer to two.

• The years between 4 and 12 were sheer hell. • As an adult he is a regular boy scout, but isolated and has difficulty with social interactions

and daily living skills. • IMHO he will always need some degree of an "external brain".

• At nineteen I had already figured out my son had over a million dollars spent on him.........For 6 years he had $450 per day for care out of our home and for several years he had prescription bills of $1000 per month.

• Now add to that the of $20,000 per year for 6 years.....boy can the money $$$$ add up fast. • He is now getting Adult services and they are also not cheap, plus he continued attending

school (with a full time EA, @ $20,000 per year ) until he was 21. >> • He is still home almost all weekend every weekend. I rescue him when he needs money for

some of his running events or a lift to a race or a meal delivered. • I still cut his hair or that would be another bill. • We have been guarantors on his lease for several years. • Both hubby and I would like to retire but our son still needs to be “snoper”vised and reminded

of what he needs to do. • My husband and I are kinship foster parents for our two grandchildren. Since my daughter

(FAS, severe mental health) delivered my first grandchild almost four years ago, I have spent close to $30,000 in legal fees so we could have standing in family court. No one else in court pays for their lawyer.

• We get a double whammy because we pay the taxes so the parents can both get free lawyers. We have been through appeal after appeal, and now that a second child has been born, we continue to fight for permanency for both of them. The lawyer fees come directly out of our family budget.

• In a few months, hopefully, (keep us in your prayers) we will take custody through a program called KinGap. Although there is a small stipend and medicaid as a secondary medical provider attached to KinGap, everything will fall on our shoulders to pay for since we are taking custody over the children without the parents losing their parental rights.

• All the expenses that have been listed can be repeated for those families that carry on with second generation offspring. Those second generation children may themselves be FASD; even if not, they are affected and expenses can be greater in some ways

• payment of child support for dd's son whom she is not allowed to see and for whom all contact has been severed for me to see as well, by the father. If child support is not paid, dd goes to jail.

• If the payments are to be adjusted, then I would need to hire an attorney, for money, of course, to represent dd in court.

• I continue to work part time because not only do I have to help my adult children with their needs, I am also raising their children. We sort of knew this in the back of our heads when we adopted but reality can be much harsher.

• How much does it cost to raise a child to the age of majority? We now have two more. • Also, years of being a stay-at-home mom because that is what my children needed does not

pay any benefits. As I get closer to my retirement age, I have no real savings for retirement. •

• .

Paying for respite Private school fees because public didn’t work

Orthodontia because of micro or macronathia Fees to obtain all the additional specialized services like trauma counselling, art therapy, OT PT speech and language etc. Cost to hire someone to ‘shadow’ them so they can participate in community recreational and social activities All the specialized meds not covered by plans ie epipens that expire regularly (@$90) Paying for property and or equipment damage Cost of cancelling planned holidays Non-financial costs-life ling friends who abandon you because they perhaps feel your kids are some how contagious alienation from families who criticize instead of understand Legal fees for conflict with the law. Lost and forgotten items Tutoring Extra dental care because personal hygiene is a problem. In hospital dental under anesthetic. Meds

Thecostofaccommodation-repairsinchildhood;renovation,rentinadulthood.

Holesinwalls,costofnewwindows,doors,TVs,vacuums,pictureframesandrelateddecorativeitemsistremendous.Onthebrightside,whenIlistittosell,I'llbeabletosayithasmostlynewwindows!

• More than 80% of families raising a child with major disabilities separate and divorce. The cost of divorce and asset loss must be considered.

• The parent raising the child may have to leave the workforce to raise the high needs child and live on social assistance, or take lower paid part time work. Lost opportunity cost is very real and cannot be dismissed.

• Lower family income places huge stress on the entire family and may well result in non-affected children leaving school early to help support the family or escape the stress, and miss the opportunity for post secondary education which would have led to a lifetime of higher income.

• The custodial parent loses the income from paid work and has an 85% probability of dealing with little or no child support or alimony payments. They also lose any contributions to savings, retirement investments, and pensions including CPP.

• The affected child will likely live on social assistance (or the street or jail), losing the quality of life and standard of living that would otherwise be expected. In today's society, under normal circumstances, children will achieve at least the level of education of their parents, and likely one step higher. Lost income potential can be easily calculated.

The cost of accommodation - repairs in childhood; renovation, rent in adulthood. FASlink Website: http://www.faslink.org