Although I consider myself a pretty strong advocate, I have been admittedly less involved with – and aware of – the Disability Integration Act (DIA). Yes, I knew it was something the disability community was advocating for and it related to the right to long-term services and supports. But, that is about the extent of my prior knowledge. This is embarrassing, especially considering that as a PCA user, it directly affects me. Nonetheless, a recent Tweet caught my eye about the DIA and its potential for parents with disabilities. Who knew the DIA had anything to do with parenting?! Certainly not I!
So, what is the Disability Integration Act?
If you are like me and have been somehow living under a rock, here’s the 4-1-1 (do people still say that or am I outdating myself?) on the DIA. According to ADAPT (who has been spearheading this important piece of legislation):
The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.2427) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
The legislation, when enacted, establishes new federal law – similar in structure to the ADA – that requires states and insurance providers that pay for LTSS to change their policies, provide community-based services first, and offer HCBS to people currently in institutions. DIA operates alongside CFC, but these two laws work very differently. CFC is an option which states can choose. Even though CFC provides money for states to support independent living, many states have not chosen CFC. DIA requires states and insurance providers that pay for LTSS to make real and meaningful changes that support the right of people with disabilities to live in freedom like every other American.
What does the Disability Integration Act have to do with parents with disabilities?
Unbeknownst to me, the DIA includes this nifty clause:
The term “instrumental activities of daily living” means 1 or more activities related to living independently in the community, including activities related to…(v) care of others, such as raising children, taking care of pets, or selecting caregivers…
In my opinion, this is HUGE!!!
As someone who has a significant disability and who wants to be a mother, I often wonder (and worry) about the how. How will I physically take care of my child? How will I lift my child? How will I change my child’s diapers? How…how…how? The questions are endless.
In my dream world, the solution is simple: I will hire a nanny. However, unless my income substantially changes, hiring a full-time nanny is not possible. At the same time, I have wondered, why can’t my PCAs help me with some of these tasks? To me, parenting certainly seems like an important activity of daily living.
Notably other countries agree! For example, in Canada, parents with disabilities can receive consumer-directed personal assistance services to help with childrearing tasks through a program called Nurturing Assistance.
Wouldn’t it be great if a similar program was available in the United States!? The DIA seems like the perfect avenue for getting these important services.
PCAs are vital to the independence of many people with disabilities, including myself. However, no longer can independent living simply mean living in your own apartment. Today, many of us want – expect, really – the opportunity to raise families, even if that means getting a little help along the way! LTSS must catch up and help us fulfill these goals!
The DIA is still in its infancy, and like most legislation, will probably take time. However, now is the time to ask your Senators to sponsor this important legislation! Together, we can make this a reality!