By: Dr. F. Edward Yazbak
In March 2003, I had the pleasure of addressing a parents’ group in Delaware on regressive autism. After I finished my talk, I went back to my seat and found my usually resilient wife visibly upset. When I asked her what was the matter, she softly answered that she would tell me later.
As we embarked on our seven-hour drive back to Massachusetts in a torrential rain, my wife, now composed, explained. She said a young mother sitting next to her had confided that she’d had to make a choice two days earlier between buying a new stove, which she needed badly, or paying for her son’s supplements and vitamins. Her decision was easy: the stove would wait.
It was my turn to be upset.
On July 11, 2005, the Times Colonist in Victoria, British Columbia, carried a front-page story by Jeff Rud and Lindsay Kines about a provincial internal audit that was completed a year earlier, but had just been obtained by the newspaper through Canada’s Freedom of Information Act.
The audit suggested that some B.C. families of children with autism, who received thousands of dollars in direct autism funding, were ill prepared to manage the money.
Linda Reid, the province’s Minister of State for Early Childhood Development, came to the defence of the families and the individualized-funding program. Reid said that the 30 families discussed in the report may have very appropriately spent the funds but had difficulty reporting the expenditures in the required format. “If we’ve got 3,000 families we are serving today,” she said, “2,970 of them have figured it out and they’re doing great.” Reid added that preparing parents to handle funds and arrange treatment is a continuing education process because “new families come on every year - 200 or 300 new families.”
Two questions immediately came to my mind:
- Why don’t we have a Linda Reid in the United States to come out batting for our children with autism and their families?
- Why has no one in the United States, the country that spends all kinds of monies helping children in faraway places, ever considered direct funding to families for autism?
British Columbia’s present yearly budget for individualized funding for autism is $32 million (Canadian). On July 15, one American dollar was worth $1.2205 (Canadian). As of January 1, the population of the province was 4,219,968.
In B.C., individualized funding helps support many services particularly independent living and respite provisions. The Individualized Funding Community Development Project, funded by the Ministry of Children, Youth and Families and administered by the B.C. Coalition of People with Disabilities, works toward building awareness and support for this worthwhile program.
British Columbia’s programs have survived and thrived for years thanks to the support of the provincial government and an unusual bond between social agencies and the families of affected children.
In October 2001, B.C.’s Minister of Children and Family Development, Gordon Hogg, released a document titled Discussion Paper on Community Living Services, in which he said, “We have to change the way we think. We have to move to a philosophy, a culture, rooted in personal capacity, valuing people for their contribution; to an asset-based, closer-to-community approach. This means changing our thinking so we are providing support that will enable individuals to contribute to their community, based on their assets rather than providing services based on their deficiencies.”
The minister’s thinking clearly and closely paralleled that of the disabled and/or their guardians. It gave the good people of B.C. greater choices and supported inclusion and self-determination. Allocating funding directly to individuals - or, in the case of children, to their parents - was a better way to help them confront their difficulties and meet their needs. Not only was it an easy way to facilitate choice, but it also rendered the clients or their parents and guardians accountable for the public money that was expended. Obviously, the funds provided were accompanied with expert advice and support to assure optimal use and greater returns.
The province became the international leader when it converted to a system of community-based services and supports for disabled children and adults. The government closed its institutions and generously funded its community services.
British Columbia was first to empower its disabled citizens to define their own needs and to access the services they required. In this way, the disabled were no longer a burden but, given the right opportunities, they actually contributed to the welfare of the community.
“The legacy of this citizenship agenda lies in embedding meaningful opportunities for self-determination at all levels within an entirely new support system for people with disabilities and families.” (1)
“Individualized funding projects” appear also to be quite well established in Ontario although that province may still be trailing British Columbia on a per-capita basis. Similar initiatives are also well underway in Saskatchewan, Alberta and Atlantic Canada.
A symposium was held in Ontario as early as October 1998 to discuss and review individualized supports for people with disabilities in general. It covered five topics: person-centered planning; building personal support relationships; individualized funds; management supports/managing the plan; and
community development/transitional support to service providers.
The following clearly stated information from the Ontario Adult Autism Research and Support Network (2) is reproduced with gratitude:
Characteristics of Inclusion:
- We are all entitled to live in the community because that is where people belong
- Making this possible for some will require consideration of "under what conditions" and "with what support"
- All people have unique value and can contribute to the larger community
- All people benefit from shared lifestyle options offered by the larger community
- The life of all in the community is enriched and maintained by the participation of all its members in education, employment, home life, recreation and interpersonal interaction
- People associate with whom they wish, but also benefit from interaction with other people who share or do not share their characteristics and interests
- We are all members of our communities regardless of overt differences such as race or gender or hidden differences such as intelligence or personality
- Community membership can only be removed under legal authority and never as a convenience to society.
How Individualized Funding Works:
- Each adult with disabilities and her/his family can have control over her/his life by ensuring that supports/services are provided in ways that s/he wants
- Funds are allocated to the person/family directly by the government, based on a personal plan (NOT a service plan)
- The plan is developed by the individual with her/his family and support network s/he chooses
- The funds are approved by the government and sent to the agency of choice
What You Can Do With Individualized Funding:
A personal plan describes how an adult needs to live and be supported, for example:
- An agency-operated group home (24-hour care)
- Staffing support in a semi-independent living arrangement (e.g., apartment)
- A home operated by family or designate (with agency support if needed)
- Staffing support to live in parents’ home
- Placement in a sheltered-work setting (e.g., workshop)
- On-the-job training and support (e.g., job coach)
- Volunteer work and/or community activities
- 24-hour or less staffing support to be able to live with friends (other people with disabilities) in house owned or bequeathed by family
- Shared-living arrangement with friends (non-disabled) with additional paid staffing support (i.e., home sharing)
Individualized Funding Can Also Enable You To:
- Manage all aspects of the planning, service design and delivery
- Pick the agency you want, and elect to move your funds to another agency any time you choose
- Purchase full service, or only part of the service, you need from one agency and part from another, or
- Purchase only accounting, payroll and administrative service if you want to hire your own staff, or
- Supervise the planning but have the agency help with the hiring, firing, supervision and accounting; and
- Bank your funds with one agency and buy services from another under a purchase-of-service agreement.
The program still has some growing pains and some problems to solve, but the Ontario provincial government is working with the citizens of the province to find the needed solutions. (3)
In the United States, much of the therapy and most of the investigations required to adequately treat a child with autism - in an attempt to stop and reverse the damage - is not covered by conventional medical insurance plans (if the parents are lucky enough to have that luxury) without a major hassle and threats of litigation.
Most medical plans do not cover speech therapy, for example, if the child is already in school. Any therapy through the school system is obviously quite limited because of the budgetary constraints and the limited staffing in the face of the present increased demand.
A request by the insured to cover the cost of chelation, supplements, vitamins or therapy for a sensory integration disorder would certainly be considered outlandish by most insurers.
The substantial cost of a gluten-free/casein-free diet is also usually not covered if the child has autism and parents are often told that its benefits have not been proven. This is obviously not so. A GF/CF diet is not a fad and children have improved with it and deteriorated without it. It is, therefore, essential for most children with regressive autism and, as everyone knows, groceries alone often consume a substantial part of a young family’s budget.
As a point of information: the Mental Retardation Division in some state departments of health may have provisions to pay for part or all of a doctor-prescribed gluten-free diet.
It is safe to say that many families in the United States spend much more of their monthly budget on their one affected child than on themselves and their other children. When the child requires Applied Behavioral Analysis (ABA), and most affected children do, the parents have major hurdles to surmount. They must either pay for the therapy or get the state to approve their request and pay the bill, which is not easy. In either case, they must then find two trained and qualified ABA therapists nearby who have some free time and can take on another child. That is not an easy job in most communities. I know parents who actually paid to train some young therapists only to lose them after a few months for several reasons: burn-out, distance to travel, pregnancy, lack of interest and even increased interest in autism and the need to return to college. Sometimes the added responsibility to continually find therapists becomes too much for the already heavily burdened parents and the child is deprived of a service that the state or the community was willing to provide.
Families enrolled in the Medicaid program can certainly have their son’s appendectomy promptly performed and covered. Having him evaluated and treated for his autism spectral disorders (ASD) is another story.
Children with a diagnosis of autism and ASD previously easily qualified for Supplemental Security Income (SSI) payments, provided that their parents’ total income was below a certain level. Recent changes in the rules at the Social Security Administration and the states’ Disability Determination Service have directly impacted qualification for SSI payments. Now, “marked and severe functional limitations” must be proved. In other words, if the child’s previously severe meltdowns and behavioral outbursts were now controlled by medication, he or she could not receive benefits.
The Individual Education Plan of the child can also affect his SSI status. A child who is placid and who is described as doing well in classroom activities - regardless of what these are - may lose his SSI payments (and sometimes his diagnosis) only because he is not violent and aggressive.
One specific item in the social security listings for autism/ASD can create difficulties and lead to the denial of SSI benefits. The covered child is supposed to have "qualitative deficits in verbal and nonverbal communication and in imaginative activity." A child with autism who can communicate nonverbally in a satisfactory manner, and who can engage in some imaginative activities, may technically not be considered disabled and may actually be easily excluded. (4)
Caring for a placid but busy 50-pound child with autism is a major challenge. The special diet, the needed programs and the supervised activities consume more than 24 hours a day of the parents’ time. We all know couples who have not enjoyed a vacation or even a “quiet” long weekend alone for years.
Caring for and controlling a 175-pound teenager, who is strong, aggressive, anxious and frustrated, is another story altogether. A few years ago, we stopped to see friends with such a child. I still remember that visit vividly. Dante himself could not have described a worse afternoon. Danish and American epidemiologists and autism experts (5) should be forced to spend a weekend with children like this before being allowed to publish a single word on autism.
Good and acceptable residential services for teens and young adults with autism, particularly those who are difficult and out of control, are limited. Though the upper-echelon staff in the institutions is usually capable, the employees directly involved in patient care are often under-trained and underpaid. Many of them have never attended a one-hour talk on autism, seizures, obsessive compulsive disorders and the aggressive behavior associated with the inability to communicate. Many employees do not even realize that the patient who cannot talk is still able to understand what is said about him and is hurt when he is called a retard.
Parents who must drive three hours in heavy traffic to visit their son, when they can, often find him asleep and heavily sedated or bruised, unhappy and out of control. If there are no other parents to tell them what happened, chances are they will never find out. Young adults with autism resent being away from home even if their “new home” is wonderful. Those who are screamed at or are otherwise abused day after day are simply devastated.
Once the young adult is admitted to an institution, the parents have little to say concerning diet and medication. If they do, they are branded as troublemakers and threatened with reprisals. Parents sometimes drive home feeling terrible. A father once told me: “I feel like a beggar.” Another said: “It is like you are leaving your son in jail”.
Marginal institutions would quickly clean up their act if the parent or guardian actually became the “buyer of services” and the one to decide where is the best place to spend the allotted funds. No longer would institutions be referred to as mediocre, poor and “the pits.”
We seem to have good autism “programs” for adults in the United States. What we need is above-average implementation and to allow parents or guardians to participate in the decision-making process.
Reacting to the rapidly increasing prevalence of autism and ASD, the Delaware Division of Developmental Disabilities Services funded a study by the Autism Society of Delaware in the spring of 2004. The study director, clinical psychologist Susan Peterson, was asked to “formally identify best practices for adults with autism on a nationwide basis, to review services in Delaware, and to outline the steps required to ensure that best practices are adopted statewide.” Peterson was assisted by an impressive and distinguished group of advisers and experts from all disciplines.
This excellent Delaware report should be read and reread by everyone who has been touched by autism and by those who care for affected adults. (6)
But as wonderful as the proposed programs are, they do not give the patients, parents or guardians any say on how the funds are to be spent and where. The result is that the young adult is sent where a total stranger wants to send him and is cared for by people who have never seen him before and who do not know him well.
It makes immensely more sense to give the responsibility to the reasonable and informed parent or guardian. Let him or her disperse the funds allocated to the child or the disabled adult, obviously with strict accounting, in order to provide the best care possible to the disabled loved one.
The Canadians appear to have made a success of their daring program in some provinces. We in the United States should seriously examine its feasibility. We are certainly generous when we give monies to other countries. It is time to take care of our own.
May be the founder of Microsoft could start a pilot program in the NorthWest. Who knows? It might work!
- The CDC finances, writes and helps publish Danish research: Another useless CDC-supported autism study. http://www.redflagsdaily.com/yazbak/files/2005_jun26.pdf