In Special Needs, I wrote about some of the comments that my daughter and I frequently get from community members who encounter us during the course of their day. In between the “I’m so sorry for you.” and the fervent “God bless you” responses, there are the sad but furtive glances steered our way. People mean well. They think they understand, but really, they don't. They do not realize that although Lauren’s life is severely challenged and our life together is far from easy, the saddest part of our journey is actually the challenges and roadblocks added by the world around us to the challenges with which Lauren was born: the hurdles of finding, keeping, and managing necessary supports and services, the difficulties in finding providers—medical and otherwise—who can and will address needs, and the indifference, ignorance, and community barriers we all too often encounter.
Because my life, by necessity, has become so embroiled in everything “disability”, I sometimes forget that the majority of people have no idea what life is like within the developmental disability community. They are truly surprised that you can’t just ask for what you need in order to obtain it. They also believe that when our children want or need to live somewhere other than the family home, options are easily and readily available. Sometimes I don’t think they believe me when I explain that our communities are not prepared to care for individuals with developmental disabilities. They don’t realize that homes, activities, jobs, medical care, and people to provide the care we parents cannot continue to provide for a lifetime, are significantly lacking. Disability-rights activist Karin Hitselberger recently wrote, "Disability means having to figure out every day how to function in a world that consistently forgets you."
Strangers, and sometimes family members, often approach me as if Lauren is a tragedy that has occurred in my life. They speak of reverence of our journey and express that they could never endure the parenting journey I am on. I can understand their fear. I can understand that their inexperience renders them unknowing, not uncaring. What I don’t understand are the people who should know better, yet do not feel compelled to care. I find that incredibly sad.
It is sad that the New Jersey Assembly has recently felt it necessary to approve a proposal for a bill of rights for families of individuals with developmental disabilities. The bill seems to be directed at how state agencies, tasked with providing services and supports, treat family members of individuals. I find it very distressing that this issue was deemed such a significant need by the legislature that they took this step to assure that state agencies operate with civility, truth, and compassion toward vulnerable individuals and their families. As Assemblywoman Downey said, “Some of these are things that should be common sense.”
A few of the rights outlined in the bill are:
The right to be treated with consideration and respect
The right to receive return phone calls within a reasonable time frame
The right to be given understandable and honest information
The right to be free from retaliation if a complaint is made
Isn’t it sad that these things had to be spelled out as requirements? A press release stated that the bill of rights will be distributed by the Division of Developmental Disabilities to case managers and “...posted in a conspicuous place in each office of the Divisions of Developmental Disabilities and Disability Services in the Department of Human Services, in each State developmental center, and in adult group homes overseen by the DDD.” But, there are no details about who will judge whether these rights are respected or not. There are no details about what the repercussions will be if they aren’t? Will this bill of rights be “posted” on walls where it will become faded and forgotten—like old wallpaper no one notices anymore?
Something else that should be a right—dental care—has long been a struggle to find for individuals with developmental disabilities. Most dentists will not see these individuals. Recently, I read the headline, “Dentists no Longer Permitted to Turn Away Patients with Disabilities” and reacted with Wow, that’s great!. And then I stopped myself. How could this have been permitted in the first place? Why has it taken this long for the American Dental Association to compel dentists to care about the dental health of individuals with developmental disabilities? Within the article it noted that dentists were concerned about the amount of time it would take to treat people with intellectual and developmental disabilities.
Jane Koppelman, a senior manager of the dental access campaign for the Pew Charitable Trusts stated, “Sometimes it’s difficult to have a patient in the chair if they are very, very anxious about being treated, if they have difficulty sitting still or if they feel a lot of fear, and sometimes those circumstances are more prevalent in people with varying disabilities.” This seems to imply that it is the dentist that deserves our sympathies....not the frightened patient. I think the individual in pain or discomfort because no one will care for their teeth is the person who deserves our sympathies. How has the dentist been prepared to treat all members of his community not just the easy ones? How have dental schools prepared their students to deal with physical, cognitive, sensory, and behavioral issues?
A mother looking for dental care for her child with autism asked in an online health forum if it was legal for one dentist after another to deny her son care. A dentist responded, “...the dental profession and its educational system as a whole have been grossly negligent in producing doctors who are able to treat such patients. ...the dental profession....is just not geared toward accessibility for disabled patients simply because the majority of dental professionals just don't think the effort it takes to treat them is worthwhile.” Wow. Isn’t that sad?
I experienced this refusal to treat with my daughter many years ago. Our family dentist wouldn’t see my tiny four-year-old because she had disabilities. Fortunately, I was able to find a wonderful dentist – an hour away – who treated her for many years. That dentist has now retired and next week I’ll find out if his successor will be as caring and accessible going forward.
Moving forward into an uncertain future is scary on so many levels for most parents of children with developmental disabilities. And, in this age of instant communication and social media, our fears are informed everyday by not only our current problems and our memories of past hurdles and injustices, but by our constant connection to the experiences of others. Today’s advanced ability to connect and share information has become a vital resource for parents, but it also provides a seemingly endless inventory of all that can and does go wrong in our children’s lives—abuse, neglect, inadequacy of supports, and the decline of once stable lives. For every one positive story there are ten that rip your heart out.
I know that although I am exhausted by this never-ending battle, I have no choice but to continue to compel others to care whenever I can. But, there shouldn’t have to be advocacy to gain rights and respect for people who should never have been without them in the first place. I look at my Lauren who has lived with grace and simple acceptance of overwhelming challenges for all of her thirty-three years and I wonder, Who can deny that she is worthy of their admiration and best efforts to assure that her life is not further wounded by their actions.....or inactions?
But the voices of advocates are all too often not much more than a whisper amongst the clamor of the many issues competing for the attention of people who hold our fate in their hands. Our president has just submitted a budget that includes deep cuts to Medicare and Medicaid – the primary funding source for disability services and supports. Over a decade, President Trump’s plan would reduce Medicare by over $800 billion and cut Medicaid spending by $200 billion. The plan also calls for cutting programs such as independent living programs, respite care, and state councils on developmental disabilities. It would seriously cut funding for Special Olympics and do away with a $51 million initiative to address the needs of those with developmental disabilities and autism. Opponents of his plan say these cuts are being used to make up for the revenue shortfalls created by corporate and individual tax cuts passed in 2017. Individuals with developmental disabilities and their families can only hope that someone in Washington will be compelled to care that they do not become collateral damage.
And like all too many other things.......Isn’t that sad?
is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.