If you haven’t read From PalParent’s Blog you should – we hear this over and over again….
Caregivers of children and adult with disabilities or a disabling heath condition need so much more: more services, more community, more money, more time, more patience, more perseverance, and more of themselves. Often there is just not enough to go around with the 24 hour/365 day constant demands on their time and energy. They are just like you and I – they want to provide for their family, have a career, see their child go to school, put groceries on the table. As a social worker running Respite Services with Easter Seals Greater Houston for twenty-one years, I have a long history of interactions with parents and caregivers who are telling me, in no uncertain terms, I do not have any more left to give. So like the PAL Blog – When Enough is Enough?
Only this week, I received a call for respite services and other assistance from a mother with a 2-year-old with Spina Bifida, a neurological condition which left the child paralyzed below the waist. The dad left the family never to return, and is now living in another state and paying no child support. The grandmother recently underwent heart surgery and had an anoxic episode in the hospital, leaving her with permanent brain damage. The mother, Mary, has a great job, and obviously needs her salary to support her family, pay her bills, put food on the table. She has HAD to use all her vacation and sick time – and was in jeopardy of losing her job as a secretary. Her young child requires urinary catheterization every six hours. For those who have not experienced this, it is not enough medical assistance to require a full-time nurse, but enough of a medical intervention that day care programs are unable to accommodate. Programs which can provide support for this mom, such as the MDCP Program (Medically Dependent Children’s Program) have a waiting list in excess of 5 years and currently have over 22,000 waiting for these essential services. To say our caregivers need more is an understatement. More support, more programs to help in situations like this, more respect, more understanding AND our community saying “Enough Is Enough”.
With the help of Easter Seals Greater Houston Respite Program and The United Way Greater Houston, Mary was able to be helped at least for the short-term. Mary is in process of interviewing four providers who will be able to do the care, until a more long-term solution can be found. Mary was persistent and diligent and found her help and support. Will it be enough? For her hopefully; for others….maybe not. The only solution is through advocacy and education of our policy makers to prioritize funding so that Mary, and thousands like her, will have enough – enough services and supports so she can have the rights we all have – the right to provide for her family, to keep her family together, the right to keep her son at home and the right to employment. Now, Mary has her son at home and she kept her job and is not dependent on government subsidies. What support will be there for her with her next crisis? Enough is NOT enough.