A needs survey conducted by the Early Childhood Mental Health Network of the Upper Valley in 2000 showed that respite was a priority need. The network's members (up to 50) are representatives of organizations that work with families and children. Twenty-nine organizations that serve children were surveyed, with a 62% response received. Specific findings of the survey were:
Some circumstances are particularly difficult:
- It is difficult to maintain a respite work force given the unpredictability of demand; the larger the respite system, the more likely to have available workers.
- It is difficult to recruit respite workers for children with serious behavioral or physical challenges. A system is needed whereby workers are recruited to provide respite to less challenging families and then are provided with training, support and incentives to serve more challenging situations.
- Parents often do not request respite because they do not know about it or because they feel they shouldn't need it. A system is needed whereby respite is perceived as a normal and necessary service and whereby agencies initiate the discussion with their clients. ALL families need respite.
- Respondents stated:
- There is insufficient money for respite.
- There exists a variety of process/systemic issues presenting barriers
- process takes too long
- eligibility guidelines are too restrictive
- there often is no process
- health care providers are not aware of the availability
A Respite Committee was formed, planning funding was sought and obtained, and, in 2001, a proposal was submitted to and funded by the Endowment for Health. The Respite Child Care Program is completing its third year of funding by the Endowment and is meeting with success as it addresses the issues stated above, which will be further discussed in 4. Organizational Capacity. At the same time, in 2001, Judith Bumbalo, Ph.D., conducted an initial needs asessment using focus groups and key informants to determine for the Special Medical Services Bureau what the priority needs of families are in New Hampshire. In the qualitative data, the theme of Respite emerged as one of the 21 major themes identified. A Delphi, or forecasting, survey is underway at the present time; the results will quantify specific needs and will be used as the Bureau addresses the 2010 Goals for Children with Special Health Care Needs stated in the 10 year action plan of the U.S. Department of Health and Human Services, Maternal and Child Health Bureau.
- emergency overnight
- dangerous children
The Respite Child Care Program at Upper Valley Support Group addresses respite child care from a wellness perspective, i.e. respite is normal, healthy and should be available for all families. The following situations are real-life, Grafton County, New Hampshire examples of the need for respite services. They are people who are now being served by the Respite Child Care Program, which the Upper Valley Support Group proposes to continue in Grafton County and expand to Sullivan County.
Over the years the Special Needs Support Center (SNSC) has continued to administer the RCCP. Many tweaks and change of focus has been necessary, primarily due to the funding sources possible to obtain. A major change was eliminating the effort of recruiting and training a cadre of respite providers, as the work demand and requests could not justify this emphasis. Instead the program focused on financial reimbursement to parents for the respite care they solicited and obtained themselves – from family, friends, and paraprofessionals. The RCCP Coordinator consulted with the parents in this recruitment process. Three month contracts were developed for each family and monitored by the Coordinator. Funding sources since the end of the NH Endowment for Health grant in 2004 have included the United Way, Grafton County Incentive Funds, and the Dolan Foundation. In recent years, because of increasingly restricted funding, the program has restricted reimbursement to families with a child(ren) with some kind of special need. The funding for Fiscal Year 2014 has become quite limited, but SNSC continues to explore funding sources, especially through foundations. All our quality control evaluation surveys – of parents and professionals – continue to indicate the extreme need and high value of the respite care resource for all parents, but especially those having a child(ren) with a special need.
- Families in New Hampshire who have children with developmental disabilities and who are on Medicaid receive respite funding and services from their area agencies; hours received are minimal due to State funding limits; more often than not, the respite hours are used so that the caregiver, usually the mother, can attend her own physician appointments, meetings with teachers or appointments for other children in the household. Where is the real respite to leave this caregiver feeling ready to resume the stresses and challenges of daily life?
- Families in New Hampshire who have children with developmental disabilities and who do not receive Medicaid funding receive little or no respite from area agencies. Because of New Hampshire budget cuts, the money is not available for services which cannot be reimbursed by Medicaid.
- A New Hampshire family who has a child with Asperger's syndrome (on the autism spectrum) and who is not eligible for Medicaid is also not eligible for respite services from either the Developmental or Mental Health Services
- A New Hampshire couple with five children with no special needs, with no family support or friends to call on and with no money to spare will not find respite available so that the parents might spend a few hours together once a month outside the home. According to a representative of the Early Childhood Collaborative of Sullivan County, the Collaborative has recognized mental health services as being one of the largest gaps in the area, a gap which includes respite child care as well as a lack of mental health respite providers. The Early Childhood Collaborative, consisting of 28 individuals and organization representatives who have an interest in the 0-6 age population, is the counterpart of the Early Childhood Mental Health Network of Grafton County.
from original Endowment for Health grant application 2001 – by Maryellen Sullivan
The Early Childhood Mental Health Network of the Upper Valley website address is www.ecmhn.org
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