My name is Kara Sellix and I am a 23 year-old graduate student at Rutgers University seeking my MSW, and my concern is very straight-forward as a future social worker and a sibling. As my parents prepare for guardianship for my sister Katie, who is currently 18 and has autism, we look towards the future and what it holds for her and we are terrified, angered, and above all frustrated. I love my sister dearly, and I will do anything to make sure that she lives a happy, meaningful life; however, there is a lot up against me and my family in that endeavor. You see, what few people who do not live this life know is that raising anyone with an intellectual or developmental disability is no easy task. The burden on families does not end once these children grow up; rather, it becomes even more difficult as the struggle becomes about finding adequate day programming, transportation and especially housing, which is not available.

If you had asked me five years-ago what happens to adults with profound disabilities once they hit 21 years-old and lose their entitlement to education, I would have said, “they go to day programs or live in group homes, something along those lines.” Very simple, very easy, right? I was completely wrong. The problem is - NOBODY KNOWS ABOUT THIS! This is rarely discussed or a part of mainstream media's conversation on disability policy.

The problem with the view that I had then is that I didn’t know then what I know now: the system for obtaining housing, funding, and care for adults with disabilities is severely flawed, inadequate and downright devastating to families everywhere in New Jersey and across the country. Though state departments (such as the Department of Developmental Disabilities in NJ, also known as DDD, or the Department of Human Services) are supposed to help families navigate a tumultuous social and financial system including applying for SSI, getting on the housing list (which people can stay on for years until housing becomes available, miraculously), and finding out about day programs for their loved ones, the case managers or support coordinators often fail to make headway. Waiting lists have lifespans that outlive parents, and many never get the help they truly need. 

I do not necessarily blame the case managers for this – I feel these issues, housing I feel being most paramount, are systemic in nature, resulting from a system that has failed to expand and accommodate the need of a booming adult population. After the Olmstead Act came to fruition, New Jersey Governor Chris Christie quickly decided to implement its action, effectively deinstitutionalizing most of New Jersey by closing two of the developmental centers in New Jersey quickly and without a plan for the people whom he would displace. This included people with extremely difficult health conditions, aging and frail parents, and many with no other plans or options on which to fall back. While his decision arguably originated with good intentions as institutionalization has many flaws, his lack of foresight shows the lack of foresight many in our government have by way of the difficulties and hardship families face as their loved ones age. He and other law makers consistently fail to recognize the need to increase funding for service providers, to change housing and zoning laws that enable more developers to build housing for this population, or to renovate housing that can become Section-8 in order to accommodate a growing population that is extremely at-risk. If Chris Christie had looked ahead at the vast number of New Jersey residents that he has now displaced and the profound impact this would have financially, emotionally, and physically for a large number of citizens, he would have realized that there was and is, more than ever, a dire need to create more housing for these individuals and he should have made a better plan to do so before he decided to begin deinstitutionalization.  Now that it is too late, we need to hold him and our other government officials accountable by asking them to remedy the problem.

Since my sister just turned 18 I am constantly looking towards her future. Applying for her social security income, obtaining guardianship for her, and looking into day programs for when she is 21 are challenging enough for any family. However, the knowledge that my sister may wait on a list for housing for years, while my parents age and possibly die thus leaving her in my care, is something I will not tolerate. These people deserve to be in the community, just as the Olmstead Act intended. However, New Jersey did not plan ahead for them and does not validate the great challenges and work of the families, care givers and service providers who struggle to meet the needs of this incredibly important population of people who are members of society and must be included in the community properly – by living in adequate housing in our communities.

This cannot happen if we do not improve the system for obtaining housing or amend the laws that control zoning of development of new housing options. Yes, these individuals should not be institutionalized but they should also not be shut out from the world in their homes with aging parents or siblings who are unable to care for them while their quality of life diminishes and their talents are wasted.

I urge you to petition these significant leaders in New Jersey to reevaluate the state of our housing laws, the budget for service providers and DDD, as well as the level of respect and inclusion we as a state offer individuals with intellectual and developmental disabilities. If we do not change the system we will be enabling thousands of adults in the future to become further victimized by homelessness or social isolation. Sign this petition, and send the message that you stand by me and thousands of adults living with intellectual and developmental disabilities and their families in this state, just like my sister, whose very livelihood is at stake unless we speak out. 

This is an issue that affects not only New Jersey but all families in the United States who can no longer afford the mental anguish, stress, and financial difficulties that can come from caring for a loved one with little hope of access to housing or better services. To ignore their voices ignores the most significant voice in the U.S. - its citizens'.