Friday, March 15, 2013

Supporting Families Part 1: Families of people with DD need help, but will they ever get the help they need?

I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities". 

The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin.  The conference was sponsored by the federal Administration on Developmental Disabilities (ADD)  [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they  attended the conference as representatives of their programs or organizations.

Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.

The Supporting Families report establishes that families do, indeed, need help:

(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".

(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability. 

  • Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
  • Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
  • Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
  • Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD  households where the primary caregivers are themselves aging."
Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.

As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.

Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD.  In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.

There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them.  It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.

It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill  gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.

That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?

One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."

The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.

stay tuned for more...

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