Services which provide In-Home support to families with special needs children and this includes adult sons and daughters as well, are in a “Perfect Storm” situation at present. Many of our families are in a worse situation because agencies are in a boat –are in the sea trying to survive.

The following are the factors behind this Perfect Storm situation.

1. Neo-natal Medical Advances –More Complex Medical
Needs Children

Our neo-natal technology has made tremendous advances over the past twenty-five years. We applaud the miracles which are often the result of these medical advances. There is, however, the other side of the equation which has been ignored. The technology also allows children with very complex medical needs to live. The medical world has done wonders to sustain life but our medical and social service systems have not been given the funding to support these high needs children once they go home. The $2,000.00 per day which sustains them in hospital evaporates once they walk out of the hospital yet their medical needs remain very high- tube feeding, ventilator systems, seizuring, etc. Some require 24 hour awake care. Parents are expected to provide that care for the most part.

2. More Complex Behavioural Needs Children –

We are all aware of the rise in the number of children diagnosed with autism. The emerging research from top sources such as Harvard University warns that we are on the verge of a pandemic of such illnesses because of the huge amount of toxins currently in our environment and food and the neo-natal plus post natal effects of these toxins on developing brains and nervous systems. See Appendix A

3. Closure of Institutions –

Twenty-five years ago the provincial government ruled that no developmentally handicapped child could be admitted to one of the large institutions. As of next year all provincial institutions are closed completely. While these closures are for the most part, good there have not been alternatives provided in the community to the extent that they are needed. At no time was there a direct transfer of total institutional capital and operating funds to the community. Some of the funding was always diverted for other government areas.

4. 2005 Mandate Forbidding Children’s Aid Societies from
Admitting Special Needs Children to Care –

A provincial review in 2004 decried the fact that children were being taken into CAS care because parents were unable to cope with their extreme medical or behavioural needs. The government decreed that this practice must stop and established a Complex Needs funding pool to resource the support needed by families with these complex needs children. Within 2 years of its establishment the pool was empty- clearly abysmally under funded.

5. Drugs and Alcohol –

We have unprecedented numbers of children who are severely medically and behaviourally challenged because of the drug and/or alcohol abuse by their parents before and after the birth of the children.

Because of the above factors we have services and families caught in the Perfect Storm – the number of special needs persons has increased, former care alternatives completely closed and the necessary community supports grossly under funded.
Here is a brief encapsulation of how our essential services are currently handicapped.
1. Infant Development
All research shows that immediate and early intervention are essential to maximize the potential development of any child’s brain and body and even more so in the cases where the development is compromised pre and at birth. In 2001 the Infant Programs in Ontario were mandated to extend their programs to age 5 from 2.5. We received a 25% increase in staff to cover a 200% increase in demand. We have done everything we can. Staff are now carrying caseloads 2 to 3 times above provincial guidelines. We have a constant of 8 infants on the waiting list some waiting up to 2 months, an untenable length given the accepted research indicating the crucial importance of intervention as soon as possible.
2. Language Development
Communication is the most central skill to the future development of a Special Needs persons well-being. Currently again caseloads are 2 to 3 times above provincial guidelines with an average wait time of 6 months for the 11 clients on our waiting list. The adult population has .2 of a position for the whole county and no communication resources have been allocated to persons being discharged from Rideau Regional

3. Behaviour Development
We have not had any increase in staff to serve community behavioural needs in 20 years. All staff increases have been linked to Rideau Regional closures and are subject to removal post final Rideau Regional closure. Again caseloads are double to triple with a waiting list of 20 for an average 5 month wait.
4. Family Relief/ Respite
Last year (06 – 07) Family Relief provided over 100,000 hours in respite to clients via the following routes: in and out of home with one to one worker, special trips, evening and week-end programs, Respite Home and Respite Apartment, Summer and March Break Camps. The program serves over 460 clients via a network of 300 + workers. By the way 100,000 hours represents 55 F.T.E.’s.

Our ACSD waiting list is currently 23 with a wait time of 3 months. Our SSAH waiting list is 35 and is completely frozen as our area office is .5 million overspent in its SSAH allocation.

Of special frustration in Family Relief circles is that in some cases both Family Relief and the Access Centre serve the same client. The client will have run out of hours with us. The Access Centre will have funding but is not able to find a worker. The Access Centre will not transfer the funding to us in such instances.
Other Pressures
1. Lack of Infrastructure Funding:
In 1995 the provincial government removed 25% of our infrastructure funding. This has never been restored. In the meantime heating, insurance, hydro etc. costs have escalated with no funding acknowledge- ment of these pressures.
2. Rural Service Delivery is More Expensive:
The province allots funding basically on a per capita basis. This puts rural and northern areas at a distinct disadvantage because no acknowledge- ment is given to the travel factor both in time and money that rural and northern areas face. It is not a level playing field for our services vis a vis those in urban centres.

1. Do the Math:
Put the necessary funds into services in the community which will free hospital beds and rescue services and families caught by the current lack of community supports vis a vis costing of hospital placement.
2. Level the Playing Field:
Higher funding for rural and northern services.
3. Restoration of Infrastructure
4. Emphasis on Adequate Resources for Pre-School Interventions.
M:DonnaRandyHillier(2) – 100308.doc

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