October is national Special Needs Law Month.  It has been my privilege and passion for over 30 years to help other families with children and adults with disabilities.  We help those clients plan to effectively use and pass on family resources for the care of dependent children and to obtain and protect valuable public benefits for those dependent family members.  Those parents and grandparents who do such planning report that they have much more confidence and assurance about the outcomes for their loved ones than before.
It was also my privilege to attend the 2014 fall meeting of the Special Needs Alliance last weekend.  The SNA is a nationwide organization of attorneys who practice comprehensive special needs law and planning.  I was elected to serve as President of the SNA for the coming year, and I look forward to the responsibility.  It should be the easiest job, since there are experienced attorneys leading and staffing committees that work with national disability organizations, contribute to state and federal public policy efforts that benefit persons with disabilities, furnish informational materials for our public website (www.specialneedsalliance.org), and provide the highest quality education and resources for our members to enable us to more effectively assist our clients.
A most interesting presentation at our meeting was a panel discussion of the book Far From the Tree by Andrew Solomon.  He wrote the book over ten years, interviewing families of children with all types of disabilities and professionals who study them.  He made a number of thought-provoking observations:

• Disabled children and their parents need resilience.  Resilience used to be viewed as an extraordinary trait, seen in the “Helen Kellers of the world,” but more recent research suggests that “most of us have the potential for it, and that cultivating it is a crucial part of development for everyone.  Even so, more than a third of parents of children with special needs report that caring for them has negative effects on their physical and mental health.”
• “Taking care of disabled children causes your biological age to outpace your chronological age, which is associated with premature rheumatic conditions, heart failure, reduced immune function, and earlier death through cell senescence.  One study reported that fathers who described a significant caregiving burden died younger than fathers with a lighter caregiving burden.  This is true, and so is its opposite.  One study found that 94 percent of parents with disabled kids said they ‘were getting along as well as most other families.’”
• More positively:   “Another [study] said that most parents they surveyed believe ‘that this has brought them closer to their spouse, other family members, and friends; taught them what’s important in life; increased their empathy for others; engendered personal growth; and made them cherish their child even more than if he or she had been born healthy.’ Yet another found that 88 percent of parents of children with disabilities felt happy when they thought about their child.  Four out of five agreed that the disabled child had made their family closer; and a full 100 percent endorsed the statement ‘I have increased compassion for others due to my experience.’”
• “While optimism can propel day-to-day life forward, realism allows parents to regain a feeling of control over what is happening and to come to see their trauma as smaller than it first seemed.  The potential pitfalls are wishful thinking, self- blame, escapism, substance abuse, and avoidance; resources might include faith, humor, a strong marriage, and a supportive community, along with financial means, physical health, and higher education.”
• An American study indicates that “higher-income families are ‘more apt to stress independence and self- development,’ while lower-income families emphasize ‘interdependence among family members.’ Better-educated, more-affluent families are more likely to seek placement for children, and white families do so more often than minority families, . . .”  Solomon did “back-to-back interviews with a wealthy white woman who had a low-functioning autistic son, and an impoverished African-American woman whose autistic son had many of the same symptoms.  The more privileged woman had spent years futilely trying to make her son better.  The less advantaged woman never thought she could make her son better because she’d never been able to make her own life better, and she was not afflicted with feelings of failure.  The first woman found it extremely difficult to deal with her son.  ‘He breaks everything,’ she said unhappily.  The other woman had a relatively happy life with her son.  ‘Whatever could be broken got broken a long time ago,’ she said.  Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.
• “Cleaving to our own lives, with all their challenges and limitations and particularities, is vital.  And that should not be exclusively a horizontal principle; that should be handed down from generation to generation with the silver spoons and the folktales from the old country.  The British critic Nigel Andrews once wrote, ‘If something or someone doesn’t work, it’s in a state of grace, progress, and evolution.  It will attract love and empathy.  If it does work, it has merely completed its job and is probably dead.’”
• “One study explains, ‘Mothers reporting higher levels of caregiving demands for their child with intellectual disability also reported more personal growth and maturity.’  The Canadian scholar Dick Sobsey, himself the father of a disabled child, and his colleague Kate Scorgie write, ‘Parents of children with relatively mild disabilities may be more likely to adjust or accommodate by making minor or superficial changes.  Conversely, parents of children with more severe disabilities may find it more difficult or impossible to go on with their lives as before and, as a result, may be more likely to undergo transformations.’  Positive transformations are achieved when initial disequilibrium, which is traumatic and brief, gives way to psychic reorganization, which is gradual and enduring.  It would appear to be true that what doesn’t kill you makes you stronger.”
• “Difference and disability seem to invite people to step back and judge.  Parents judge what lives are worth living, and worth their living with; activists judge them for doing so; legal scholars judge who should make such judgments; doctors judge which lives to save; politicians judge how much accommodation people with special needs deserve; insurance companies judge how much lives are worth.  Negative judgments are not confined to people who perceive themselves to be in the mainstream.”
• Parenting a severely disabled child “clarifies the dynamics of a marriage as it does friendships; for parents who do not have real intimacy with each other or with friends, the going can be tough.  ‘Social isolation remained a correlate of less positive mood, more depression, less attachment,’ one study found.  Participating in support groups, advocacy, and medical research can help parents reframe their experiences.  Making social connections with their child’s caregivers is also helpful.   Empathy and compassion work best in concert with the belief that you are still capable of shaping a meaningful life for yourself and your family.”
• “[P]arents of disabled children often achieve a feeling of control by making a firm and positive affirmation of their lack of control.  The most important thing, often, is a belief in something bigger than one’s own experience.  The most common source of coherence is religion.”
• “The life expectancy for people with disabilities is increasing; in the 1930s, the average age at death for institutionalized mentally retarded males was about fifteen and for females about twenty-two; by 1980, the figure for males was fifty-eight and for females it was up to sixty, though people without mobility die younger.”
• “Siblings of severely disabled children have been studied extensively, but with inconclusive results.  One study mentions that persons with disabled siblings ‘felt that living with a disabled brother or sister helped them be more responsible, be more tolerant,’ better able to see ‘the good in others, develop a better sense of humor, and be more flexible.’  However, these siblings also reported ‘embarrassment, guilt, isolation, and concern about the future of their disabled sibling.’”

If we can assist you with planning for your disabled child’s future, contact us online or call us today at 601-987-3000.