Words Worth Repeating
“The Graying of Our Greater MetroWest Population with Developmental Disabilities”
Lois Rose, a long-time champion for our special needs community, related her own story as the keynote speaker at the Aging and Disabilities Roundtable in September. Lois has devoted her professional and personal life to advocating for people with disabilities. In her former capacity as a Federation professional, Lois facilitated the work of the Commission on Individuals with Developmental Disabilities and conducted the first needs assessment of people with disabilities in our MetroWest community, which resulted in the establishment of the very first kosher group home in Millburn. She also developed and implemented a plan for the creation of Jewish Services for the Developmentally Disabled (JSDD), an independent Federation partner agency charged with providing services to enrich the lives of the vulnerable adults with disabilities population.
Attendees of the Aging and Disabilities Roundtable were fortunate to hear Lois share her expertise and thoughts when Jewish Federation of Greater MetroWest convened this forum for professional staff of its partner agencies to discuss the aging of our population with developmental disabilities. The forum was hosted by Greater MetroWest CARES, which works with agencies that address the needs of mature adults, and from Greater MetroWest ABLE, which works with agencies that address the needs of individuals with disabilities and their families.
Now a lay leader, Lois delivered a speech, excerpted here, which included an overview of how far we have come in serving people with special needs and their families and concluded with a call to action. Her remarks are certainly Words Worth Repeating.
Keynote speech at the Aging and Disabilities Roundtable
Delivered by Lois Rose on September 23, 2016
My daughter Margo will be 50 years old in June. The youngest of my three children, she is a young woman – oops, middle-aged woman – petite and pretty, and has brown eyes and brown hair that she wears in a pixie cut to frame her face. Recently, I have noticed a few gray hairs.
Warm and loving, Margo has an engaging personality and an amazing sense of humor. She has a strong sense of self and knows what she wants. Margo is unusually perceptive and insightful. She is proficient in using the computer and works every day to input data and write letters to various people. She is a master at eavesdropping and gossiping at her workplace.
At home, Margo enjoys listening to soaps and the news. On weekends, she loves eating out, going to the movies, and seeing Broadway shows. She goes on vacations to Lake George, Atlantic City, and the Hamptons.
Her family is her main priority. She adores her sisters, brothers-in-law, nieces and nephews. Her father, who passed away seven years ago, was her hero.
My daughter will be 50 years old in June and has cerebral palsy. She lives in a group home in New Rochelle with three other individuals. She has average intelligence. Her neurologist will tell you that her diagnosis is spastic quadriplegic with athetoid movements. As her mother, I feel more comfortable telling you that my daughter is severely handicapped and has no independent function. She needs assistance with all the skills of daily living. Her only independent skill is her ability to grasp the joystick on her electric wheelchair and to gain and feel the freedom to go wherever she wishes.
Margo wears her hair short so she can utilize a head stick to access her computer. At her workplace, she painstakingly touches each key with a pointer to compose a document. Although it may take her three hours to accomplish a task that would take you 15 minutes, her work is the mainstay of her life. She feels productive because she is a contributing member of society. She receives a daily stipend for the work that she produces.
Margo yearns to be like her sisters in every way. She yearns for the lives that they have and has told me that she knows she will never have what she wants: a husband, children, and a family.
A few months ago, long before I knew I would be asked to give the welcoming address today, Margo asked me, “Why does your body change as you get older?” I quickly responded, “That’s called aging.” And we quickly changed the subject.
Preparing these remarks for this morning’s Roundtable has forced me to confront this topic. At times the process has been difficult and challenging. Consistent with the findings that people with cerebral palsy age earlier than those with other types of disabilities, Margo has already begun to follow that path.
Ever since her father died, Margo calls me every night. Is she checking in? Or is she checking out if I am okay? When she cannot reach me she calls her sisters who assure her that I am with friends. She replies, “You know, Beth or Debbie, I only have one parent.”
Her phone calls are frustrating for two reasons: her speech pattern has changed as she has gotten older and I often cannot understand her. And to be honest, I am not as patient as I used to be, and my hearing is not so acute. Need I say more? I, too, am getting older.
I am confident that my daughters will take care of Margo when I am gone. The question that is most pressing to me is: Who will help Margo through the grieving process at a time when her sisters will be experiencing loss as well?
The aging of our population with developmental disabilities represents “50 shades of gray.” So many disabilities, so many levels of functioning, so many unique family dynamics, so many variables. All compounded by the fact that they share many similar health concerns with their peers without disabilities, but have the additional burden of aging with a lifelong disability.
Our task is complex and complicated. But our journey over the past 30 years has demonstrated the power of professionals to transform the landscape of the MetroWest community. There are few limits to what we can accomplish when we come together and share our skills, vision, and commitment and focus on a particular issue. Our commitment as change agents brings us together. Our diversity is our strength.
In 1986, very few services were available for children and young adults with learning and neurological impairments. Adults with disabilities were largely underserved. Only one agency, JESPY House, provided a network of coordinated services, including residential, to adults with learning disabilities.
The results of the first survey of people with special needs and their families laid the groundwork for the establishment of a kosher group home… and the eventual establishment of JSDD, which currently operates 11 residences and the Wae Center. Today every agency in the community and the majority of synagogues provide services to this vulnerable population. Committees of inclusion flourish as people celebrate the strength of diversity. Two strategic Federation committees bring together lay leaders and professionals to address issues related to people with special needs. Collaboration among agencies has become the birthplace of new and expanded programs. This morning’s program, coordinated by MetroWest CARES and MetroWest ABLE, adds another dimension of collaboration and ushers in a new chapter.
As we turn our attention to the needs of this very special aging population, our journey to enrich their lives continues. Let us begin!